Ride Ataxia

Ride Ataxia Exceeds $1 Million In Funded Research

2011-12-12T09:32:00.000-08:00

Ride Ataxia is making a big impact toward treatments for FA by directly funding research. When every day is critical to each of us it is important to recognize milestones as they pass to keep ourselves motivated and pushing forward as fast as possible.

The new FARA newsletter will be hitting mailboxes over the next couple of weeks and there is one section of special interest to anyone who has supported Ride Ataxia either as a donor or a participant. The section is at the end of the Update on FARA's Research Grant Program and it is called Recently Awarded Named Grants. This section includes the descriptions of two research grants which put the total funded research for Ride Ataxia at a staggering $1.2 million since 2007. The first is named The Phillip Bennett Translational Research Award in honor of one of the original pioneers of FA research fundraising. This award is made possible with funds from Ride Ataxia NorCal and the Phillip Bennett Memorial Fund. The second award is called The Kyle Bryant Translational Research Award. The title and description of the two newly awarded grants is at the bottom of this post.

There are a couple of reasons to be excited about these two specific grants.

The Phillip Bennett Translational Research Award, given to Gino Cortopassi at UCDavis, is for the continuation of a project that started with funds from Ride Ataxia in 2009. Dr. Cortopassi has been hard at work and has produced some impressive results with his high throughput screening program in the last two years, and we want help advance his work towards the finish line. An additional exciting factor about Dr. Cortopassi's project is that he is looking at existing drugs that have already been approved for use in humans which carries significant potential to reduce the development time to clinical trials in FA.
Dr.Sarsero's project is a new approach to FA which aims to fix the root cause of the disease - a defective gene. Gene therapy is an area of research that FARA's scientific advisers have identified as a need because of the potential for a profoundly curative therapy. Dr. Sarsero's research is part of the plan to fill that need.

Ride Ataxia funded grants have advanced three drug candidates in our treatment pipeline and will add new candidates in the near future. For a full list of all the other Ride Ataxia funded grants and progress updates please check: http://rideataxia.org/research.php. It is clear that Ride Ataxia has made a significant, tangible impact on advancing research. Further updates to these projects will be posted as they become available.

When Ride Ataxia originated with our first cross country trip in 2007 our goal was to raise $30,000. We had no idea where the money was going to come from, we just threw the goal out there and gave it our best. We raised $40,000 during that trip and were amazed by the generosity of our friends and family. Ride Ataxia provided a platform from which to talk about FA with people who cared about us and they responded with immense generosity. Over the past few years Ride Ataxia has provided the platform for thousands of people to talk about FA from a place of pride and empowerment rather than a place of fear and helplessness.

We reach our goals because of collaboration from friends, family, cycling enthusiasts and sponsors; the most significant of which is the steadfast support of Outback Steakhouse.

As we cross the $1 million mark we think about where we have come from with our sights fixed on the finishline: treatments and a cure for FA.

Recently awarded grants:

Phillip Bennett Translational Research Award
Principal Investigator: Dr. Gino Cortopassi,
University of California, Davis

Repurposing existing approved drugs for FRDA therapy using a novel high-throughput screening assay and a library of 1640 drugs that have already been approved for use in humans, Dr. Cortopassi identified 40 drugs that protect FRDA patient cells from death. The screening assay is based on the sensitivity of FRDA fibroblasts to the thiol oxidant diamide. The goal of this project is to determine the mechanism of action of these protective drugs. Dr. Cortopassi will also examine their relative potency and their efficacy in cell and animal models in preparation for clinical testing in humans. Because these drugs have already been approved by the FDA for other purposes, this “repurposing” approach has substantial potential to reduce the lag time between laboratory testing in cell and animal models and approval of the drug as a treatment for FRDA. Thus, determining the mechanism and efficacy of these drugs is a top priority, because of the potential for rapid translation to FRDA patients.

Kyle Bryant Translational Research Award
Principal Investigator: Dr. Joseph Sarsero, Murdoch
Children’s Research Institute, Melbourne, Australia

Correction of FRDA iPS cells by non-viral gene therapy.
FRDA is an inherited progressive disorder of the nervous system and muscles that results in the inability to coordinate voluntary muscle movements. Improper heart function is also a common and life-threatening condition of the disease. The genetic defect that causes FRDA results in reduced levels of an essential protein termed frataxin in all cells of the body. Stem cell therapy has the potential to repair or replace damaged tissues and restore organ function in individuals with FRDA. Major advances in stem cell technologies have led to the development of ‘embryoniclike cells’ from adult human tissue. These cells, known as induced-pluripotent stem (iPS) cells, have essentially the same properties as embryonic stem cells, and thus can be used to derive any mature cell type. Prior to the transplantation of nerves or heart cells derived from FRDA iPS cells, it will be necessary to restore frataxin protein to levels compatible with normal cell function. In this project Dr. Sarsero and his collaborator, Dr. Mirella Dottori, propose a means to correct the defect inherent in FRDA iPS cells by a gene therapy approach that will restore normal FRDA gene expression and does not leave any ‘genetic scars’ in the cells. The strategy addresses major safety concerns for the clinical use of iPS cells and should facilitate compliance with regulatory agency requirements for the approval of the use these cells in transplantation medicine.

Ride Ataxia Orlando

2011-08-02T10:49:00.000-07:00

Building on the momentum we established with our ride in Tampa, FL last year, the Orlando location will provide a well supported, challenging ride for all riders. The Orlando ride will feature 16, 25, and 50 mile routes allowing participation from all ability levels. All routes will feature strong SAG support, fully stocked rest stops, and what has been called "The best post ride food ever" provided by Outback Steakhouse and Carrabba's Italian Grill. All routes will start and end at Waterfront Park in Clermont, FL.

The 16 mile route will take place on the South Lake Trail heading east with a rest stop and turn around point at mile 8. This out-and-back route will give riders the option to ride a shorter length if they choose. View the 16 mile route here: http://rideataxia.org/orlando/images/16map.png.
The 25 mile route will travel around Lake Minneola, out to Groveland to our first rest stop at Lake David Park and back. This route will include varied traffic conditions and is recommended for intermediate and advanced riders. View the 25 mile route here: http://rideataxia.org/orlando/images/25map.png.
The 50 mile route will travel around lake Minneola, out to Groveland, up through Mascotte, around through Ferndale and back to Clermont. This route will also include varied traffic conditions and is recommended for advanced riders only. View the 50 mile route here: http://rideataxia.org/orlando/images/50map.png.

The Orlando location will provide access to one of the country's premier cycling atmospheres and will allow us to partner with strong teams from Outback Steakhouse, Carrabba's Italian Grill, and Catrike. The ride will also receive support from Coca-Cola and Brown and Caldwell.

We look forward to seeing you on the road or trail for Ride Ataxia Orlando on November 6, 2011.

For all the details and to register please visit rideataxia.org/orlando.

Registration is open for Ride Ataxia Philadelphia 2011

2011-06-29T12:30:00.000-07:00

The 3rd Annual Ride Ataxia Philadelphia will offer 5, 10, 25, and 50-mile route options starting and ending at Limerick Community Park in Limerick, PA on October 9, 2011. The ride will once again feature well marked courses and cue sheets, fully stocked rest stops, and strong SAG/mechanical support provided by Bike Sport, Tri County Bicycles, and Spinners Mobile Bike Repair. Additionally the ride includes what has been called "the best post-ride food ever!" with a delicious meal provided by our presenting sponsor Outback Steakhouse plus Carrabba's Italian Grill and Bonefish Grill. You will not leave hungry!

Last year Ride Ataxia Philadelphia welcomed 400 riders and raised $150,000 for Friedreich's ataxia (FA) research!

Please follow these simple instructions to guide you through the registration and fundraising process for Ride Ataxia Philadelphia.

1. Register for the ride

Go to rideataxia.org/philly
Click the button at the upper left that says "Register to Ride". This will take you to the Ride Ataxia Philadelphia Active.com registration page
At the Active.com registration page, click on the green button to the upper right that says "Register Now"
Pick your preferred ride length (If you are registering as a team of 10 to receive the discounted rate, you must choose a team Captain to create the team. After the team has been created each individual team member can register and find the team under the name created by the captain, max is 10 per team for registration), read and agree to the waivers, fill in your date of birth and click "Agree and Continue"
Fill out all your information and answer the questions. Scroll down and click "continue"
Fill in your payment information and click "Pay Now". Note: Your registration fee goes to FARA; the "Processing Fee" goes to active.com.

2. Now that you have registered to ride, you need to create your personal fundraising page...There are two ways to do this.

a. After you register to ride (step 1 above) you will receive two confirmation emails, one is a receipt for your payment and one has instructions on how to set up your fundraising page. Follow the instructions in the email.

b. Follow the instructions below:

Go to rideataxia.org/philly
Click the button at the upper left that says "Donate Now". This will take you to the event fundraising site.
Click on the link in the uper left that says "register"
If you were a participant last year, choose "I already have an account", enter your email and password and then click next (please skip the next bullet). If this is your first Ride Ataxia event choose "I need to create an account" (this is completely separate from the active.com registration in step #1) then click "next"
Fill in your information and click "next"
Set your fundraising goal, AIM HIGH! Enter your display name and click "next"
If you would like to create a team choose "Create a team". If your friends have already created a team that you want to join. click "search for an existing team". Note: Everyone on a team will all have an individual fundraising page with an individual total and those individual totals will be combined for the team total on the team page. All team and individual totals will be combined on the event page. Note: there is no limit to the number of people you can have on a fundraising team. If you registered 2 teams of 10 in step 1 above they can all be on the same team for fundraising. If you do not want to join a team choose "Do not join a team". Click "next".
confirm your info and click "next".
you will receive a confirmation email which will take you to your page where you can upload a picture and write a personal message to your potential donors. Here is an example: https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/raphiladelphia/individual.do?participationRef=968.0.418554997
copy the link for your page, paste it in an email or on facebook, twitter...tell everyone about your efforts to help cure FA!

Multiply Your Vote with Power Votes

2011-06-14T12:47:00.000-07:00

From the previous post you know that The Ataxian documentary is in the running for a $50k grant from the Pepsi Refresh Project (refresheverything.com/theataxian).

The film needs this money because the footage will need sound and color work which will need to be contracted out. The cost will be roughly $50k. The voting will be open for a few more weeks and the top 10 ideas with the most votes will be awarded $50k.

Voting has been open since June 1 and your efforts to date have earned us a ranking of 21 out of hundreds of ideas. This is pretty awesome, thank you.

As a reminder there are three ways to vote and you can do one or all three.

Send a text daily to the number "73774" and write "106922" in the body of the message.
Cast a vote daily either through your Facebook login or directly through Pepsi refresheverything.com/theataxian
Buy Pepsi products that have the Pepsi Refesh Power Vote, Enter the code at refresheverything.com/theataxian to cast your Power vote.

I want to address #3 on this list because I think it is the key to success. With power votes, you enter the little code on the inside of the yellow cap and you can get 5, 10, 15, 25, 50 or 100 votes per code. But here's the kicker: you can power vote up to 10 times per day. So yesterday I did a little experiment. I went to the store and bought 10 Pepsi's (2 20 oz. and 8 2 liters) and I power voted 10 times. In the end I got a total of 165 votes. We are currently 21st and we need to get into the top 10. I am confident that power votes are needed to get there. I am not suggesting that we do not need the single votes because we need it all and I am not suggesting that you go out and buy 10 Pepsi's each every day, I just wanted to bring attention to power votes and how they might benefit our effort. Even with one power vote per day you will at the very least have 5 votes per day instead of one.

For those who do not have any idea what a power vote is here is a little tutorial with help from refresheverything.com:

Look for power vote codes on specially-marked Pepsi products. Look for bottles with yellow caps or any Pepsi product that says "Power Votes" on it (limited to Pepsi, Diet Pepsi, and Pepsi Max). The Code will be under the bottle cap or printed on the inside of your multi-pack. For example:

Click Image For Larger View

After you have located your Power Vote Code visit refresheverything.com/theataxian:

Above the big button that says VOTE FOR THIS IDEA is a link with the text "Power Vote For This Idea", click that link:

You will be taken to a page that looks like the one below. Click on the Button That says "Sign In."

You will be given the choice to sign in with Facebook or through Pepsi. However you must login with Pepsi to enable power voting. So if you have a Pepsi login choose "Sign in with Pepsi." If you don't already have a Pepsi login choose "Sign up", you only have to give them your first name, last name, email and birth date to create an account.

The "Prove you're not a robot" code is a little tricky sometimes but keep trying, you'll get it.

After you are logged in you will find a screen that will allow you to enter your power vote code:

Enter your code and click "Activate." Pepsi will work it's magic as it determines the value of your code. This one was worth 15 votes:

Now click link that says "return to your last idea." It may take you to The Ataxian idea page (this is where you want to be) or it may take you to "secure.refresheverything.com/index" if it does this just replace the word "index" with "theataxian" so you end up at "secure.refresheverything.com/theataxian" which should look like this:

Click on the big yellow button that says "Power Vote" aaand your power votes will be applied to The Ataxian! You just multiplied your vote by at least 5!

If you have more than one code you are not done! Simply click on the link to the lower right that says "Activate Power Voting" which will bring you back to the screen where you can enter another code!

The Pepsi site is a little finicky sometimes and it may log you out from time to time as you are going through the power voting process but just log back and keep plugging away. The time you spend on this is appreciated by thousands of people all around the world. Thank you for your time and effort.

Use up to 10 codes a day to help us get closer to the completion of this film and closer to a cure for FA!

Vote for The Ataxian documentary in The Pepsi Refresh Project

2011-06-01T18:41:00.000-07:00

The Ataxian documentary which chronicles Team FARA’s 2010 Race Across America journey is in the running for a $50,000 Pepsi Refresh grant but THEY NEED YOUR HELP. The Pepsi Refresh Project will award 10 grants to the Arts & Music $50,000 applicants receiving the most votes in the month of June. If they win, The Ataxian filmmakers will use the funds to help cover their post production costs.

You can vote for The Ataxian starting today.

You can either vote online from the above link and/or text your vote daily (Text 106922 to 73774). Voting continues through the whole month of June, and we need everyone to vote everyday. If you are a Pepsi drinker, you can also increase the power of your vote by entering the Power Vote code on select Pepsi products.

Please share this information with family and friends. We believe this film not only has great potential to raise awareness for FA but is also a universal story on the strength of the human spirit. Here is the link that you can send to family and friends: http://refresheverything.com/theataxian.

View the trailers for the film here:

Ride Ataxia NorCal - True Progress

2011-05-26T11:24:00.000-07:00

Ride Ataxia NorCal took place on May 14, 2011 and was a day of comraderie and true progress toward our goal of treating Friedreich's ataxia (FA). The ride included more than 300 riders who helped raise over $100,000 for FA research!

The weekend Started with packet pickup at Ken's Bike and Ski on Friday afternoon. We set up in the parking lot at Ken's and we distributed a few packets and shopped for new bike gear in Ken's. This was the first time everyone had been together in a year so it was great to see everyone including Team Bridgman, Team Kiela, and The Rupeloton.

After Packet pickup we all headed over to the US Bicycling Hall of Fame (USBHOF) for a reception hosted by our generous partners at Brown and Caldwell. At the reception we saw some really cool bikes and learned about the history of bikes. During this intense history lesson we had appetizers by Outback Steakhouse, wine, beer, soft drinks, and good conversation as we caught up with more friends we had not seen for a while.

Team Bridgman came down from Seattle, WA

During the reception at the USBHOF we honored a couple people including Phillip Bennett, the force behind Sunset on FA (SOFA). Unfortunately Phillip passed away earlier this year but his spirit lives on through the 2011 Phillip Bennett Translational Research Award which will be funded with proceeds from the ride combined with funds from Phillip's memorial fund. Find out a little more about Phillip HERE.

That night we also honored Wally and Mary Krill who have been part of the Ride Ataxia Movement since the very beginning. Wally and Mary provided SAG support with their motor home during Ride Ataxia I, II, III, and they were among the biggest contributors in the planning and execution for Ride Ataxia NorCal 2010. They received the 2011 Ride Ataxia SAG Award for their dedication too the advancement of the Ride Ataxia Program.

Wally, Mary, Kyle

The next morning registration opened at 730am with bagels, granola bars, fruit, coffee, juice...anything you need to start the day off right. In the end we registered 40 people the day of the event bringing our total number of registrants to more than 300.

The 50 mile route and the metric century (actually 68 miles :) started at 8:30 am after a few words reminding the riders why we were making this effort. We reminded each rider to have fun but more importantly to realize that each pedal stroke gets us closer to treatments and a cure.

The 30 milers took off at 9:15 and the 15 milers took off at 10:30. This map shows how all the routes relate to each other:

As you can see, the 30 (red), the 50 (blue), and the 100k (Black; actually 68 miles) all overlap at the rest stop in Winters. This stop was killer! Lots of food and lots of friends as all the routes cycled through that point. You could ride the 30 miler and see a friend who was on the 100k, it was a lot of fun!

Our riders were well taken care of at this rest stop and at the three others throughout the routes. There was more than enough food thanks to one person and his many friends and business partners. Greg Mazeres works for UCDavis Dining Services and he rallied all his vendors to support the cause with in-kind donations for our rest stops. This ride is frequently referred to as Ride A-Snacks-ia because of the huge spread that Greg provides. Most participants consumed more calories than they burned because the food was so tasty and plentiful. Thank you Greg!

Our rest stop sponsors included: UCDavis Dining Services, Sysco, Coca-Cola, Dawn Food Products, Naked Juice, Fresh Point, Gatorade, Kellogg's, Clif Bar, Maxwell House, Kraft Foods, Planters, Michael Foods, Heinz.

One of our special guests who came out to ride with us was Dr. Gino Cortopassi from UC Davis. Gino received a grant funded by Ride Ataxia in 2009 for his work on "Screening For Multifunctional Friedreich's Ataxia Therapeutics". This project has produced some very positive results and is contributing to pushing treatments forward. Dr. Cortopassi just got back from the 4th International Friedreich's Ataxia Scientific Conference in Strasbourg, France but jet lag was not going to keep him off his bike that day. Gino is a strong part of our FA community.

Also pushing the effort that day was a huge showing of volunteers. Our volunteers included members of the Iota Phi Chapter of Alpha Phi Omega from UC Davis who provided assistance to riders at tricky turns and helped us out with registration.

We also had lots of volunteers at each rest stop serving food and making sure the riders got everything they needed to keep riding for research!

Our Sag crew consisted of 3 bike mechanics (two mobile and one stationary at the winters stop) and 7 roving cars plus one motorcycle. There was assistance close by the entire time if any of the riders ever got in trouble. The mechanics fixed many flats and repaired several bikes and the rovers gave a few rides to riders who needed it.

Leading our SAG effort was Lee Mitchell in his famous red Bike Van. Lee is a legend in the Ultracycling world. We met Lee when we were preparing for Race Across America and Lee has been a great friend ever since. Lee has been providing SAG for an event in the Bay Area for 10 years and it happened to be on the same day as NorCal this year. Lee decided to use his expertise for FARA that day and for that we are ever grateful:

Photo courtesy of Ultracycling Hall of Fame

Our mobile mechanics included Mad Cat Bicycles:

And The Bicycle Medic:

Here are some of our riders in action:

After the ride we enjoyed an incredible meal of ribs with all the fixin's from our partners at Outback Steakhouse.

Plus a short talk about research and the role of fundraising in the process of curing this disease. With comments from one of the brilliant people who is actually performing the research, Dr. Gino Cortopassi.

Ride Ataxia Nor Cal is not only part of the national Ride Ataxia movement to fund research in search of treatments and a cure for FA, Nor Cal is the home of this effort. So many in the Nor Cal community have supported Ride Ataxia since our very first ride in 2007 and have ridden with us repeatedly in subsequent rides. People throughout California, and from Washington, and Montana. Thank you all for being the force behind this movement- for coming out year after year, for growing the event to your family and friends, and for fundraising with a big heart. Each of you have made an impact in my life and are postively affecting the lives of thousands of families with FA. Can't wait to see you and ride with you next year!

Discounts for NorCal riders!

2011-05-02T10:30:00.000-07:00

Attention NorCal riders! Looking for equipment deals in preparation for the ride on May 14? For the entire week leading up to the ride, Ken's Bike and Ski will be offering our riders 15% off their lowest posted price on any cycling accessories, and 5% off their lowest posted price on any bike.

Check them out any time that week or we'll see you there for packet pickup May 13 from 4pm - 530pm!

To find out more about Ride Ataxia NorCal or to sign up or donate please visit the Ride Ataxia NorCal event website.

Jerseys To Honor Phillip

2011-04-29T10:11:00.000-07:00

Our jersey designer, Larry Phillips (Superlario) read the previous blog post just as the NorCal jerseys were being finished with printing. He called me and told me that he was going to send the fabric for the collars back through the printer before they were assembled so they could print a memorial to Phillip on the inside Collar of each 2011 NorCal jersey. I can't wait to get mine!

Here is the final design with the Phillip Bennett Memorial which will appear on the inside collar of the jersey.

Thank you to our Jersey Sponsors: Brown and Caldwell and Edison Pharmaceuticals.

Each participant who fundraises $500 or more will receive a jersey either in your goodie bag (available the day before the ride) or to be shipped after the ride (for those fundraisers who may not have met the jersey deadline).

To find out more about the ride in Davis, CA please visit the Ride Ataxia NorCal Website.

Ride Ataxia NorCal - Dedicated to the Life of Phillip Bennett

2011-04-13T14:19:00.000-07:00

Phillip Bennett is remembered for his confidence and passion for life. He was focused on others as he was a leader in the charge to find a cure for FA. For that reason we dedicate the 2011 Ride Ataxia NorCal to Phillip Bennett.

Phillip was not afraid of the future that this disease had planned, he lived moment by moment, squeezing every drop from life. Phillip's close friend Jamie Richards writes ‎"Too many of us wait. And wait, and wait. Someday, we tell ourselves, we'll say it, start it, try it, do it or complete it. Phillip didn't wait. He swam and skied. He rode roller coasters. He rappelled and river rafted. He even went spelunking. He made friends. He laughed. He partied. He crammed 72 years of life into 27."

Phillip was the force behind Sunset On Friedreich's Ataxia (SOFA) which was a trail blazing effort, as it was the first substantial fundraiser dedicated strictly to FA research. This community dinner/dance/auction raised a total of $200k during its reign and led the way for many other large fundraisers to follow.

Phillip was always thinking bigger and better for the cause and for his own life. With reckless abandon and contagious enthusiasm he participated in activities such as Snowskiing:

Waterskiing:

Whitewater Rafting:

Hang Gliding:

And Skydiving:

Phillip is sorely missed but he will never be forgotten. He spent the last year and a half of his life writing his memoirs. The book was incomplete when he passed away. However Phillip's close friend Jamie Richards worked with Phil on the book and will finish it. View Jamie's article about Phil here.

Each year Ride Ataxia funds several research grants with the proceeds from the rides. This year the proceeds from the NorCal ride will be combined with Phillip's memorial fund. This money will be used to fund the 2011 Phillip Bennett Translational Research Award. There will be a request for proposals at the 4th International Friedriech's Ataxia Scientific Conference in Strasburg, France on May 5th and the funds will be distributed before the end of the year.

At Ride Ataxia NorCal we are riding for Phillip and his wish to end FA:

"Hope is a disability’s nemesis, and I hope a cure is found soon." - Phillip Bennett 7/8/1984 - 3/1/2011

To sign up for the ride and to help raise funds in honor of Phillip please visit the Ride Ataxia NorCal Website.

Ride Ataxia Dallas - Everything is bigger in Texas!

2011-04-05T10:32:00.000-07:00

The ride was a great success with 555 registered cyclists and over $170,000 raised to support FARA's mission- to treat and cure FA through research advancement. This is our biggest turnout to date and it sets the stage for a record setting year for participation and fundraising with Ride Ataxia!

The wind was tough but it was a beautiful day for a ride. Twelve of our FA families joined us from, Oklahoma, Michigan, Oregon, Florida and neighboring towns in Texas, on bikes and trikes- marking the day as one of camaraderie and personal triumph.

FARA is grateful to Outback Steakhouse for making Ride Ataxia Dallas a truly great event. FARA is convinced that finding a cure requires collaboration from many different partners. Outback's steadfast partnership has allowed FARA to direct more funds to research than ever before. This year for the Dallas ride the Outback Steakhouse midwest region donated tips, held fundraising contests, and got creative with a result of a check for $124,500 for FA research. We can't thank Outback enough for their undying support!

A few days before the ride began, we were featured in a Local newspaper; the Lewisville Leader. Check out the article here.

The day of the ride was beautiful! It was sunny and warm with a little windy. Crowds of cyclists showed up at registration at 7am. A line formed but our volunteers kicked it into high gear and took care of the registration process in time to start the ride on time at 830.

The 50 mile riders took off first at 830am in staggered groups of 50 to 70 riders, spaced 10 minutes apart. This was a safety measure to avoid sending a group of 200 riders onto the roads all at the same time. It was overwhelming to see that many riders out to support the cause.

The 25 mile ride took off at 915 in the same fashion with slightly less participants. The 6 mile route took off at 1030am. The 6 mile route included some of our top fundraisers including the Newman family and the Dewitt family.

Out on the course the riders battled wind and tricky turns. They stopped at three rest stops along the way; two of them were provided by Outback Steakhouse and featured Steak, Shrimp, and Ribs! Wow, we were treated like Kings!

After the ride we all gathered at the amphitheater to enjoy a little music and dancing provided by our volunteer DJ's and our youngsters. The post ride celebration also included great Outback Steakhouse food and activities for the kids.

Toward the end of the afternoon we invited one of our funded researchers to come down and share his experience with the crowd. Dr. Marek Napierala is originally from Poland and has been working on FA research in Houston (formerly at Texas A&M presently at MD Anderson) for several years. In 2005 Marek was the recipient of FARA's New Investigator Award for his research on a high throughput drug screen and in 2009 Marek received the Kyle Bryant Translational Research Award to continue this research. During his talk, Marek illustrated the power of FARA. Marek said there are thousands of scientific research papers about Ataxia. About 2/3 of them are on FA, so there is a lot of research and knowledge about this disease. Marek reads all these papers and he always takes a peak at the acknowledgements. He noted that FARA is listed as a funder in the acknowledgements more often than not. Marek used this illustration to make the point that FARA is the leader in FA research advancement and FARA has pushed the field along at a very fast pace. We cannot thank Marek enough for his hard work, his brilliant mind, and his commitment to FA research!

Our first ride in Dallas was an amazing, successful, rewarding experience! We learned a lot about how to accommodate more riders as we grow bigger and bigger. We will use this knowledge as we plan for next year! We'll see you then!

Next Ride: Ride Ataxia NorCal, May 14, 2011

See more pictures, videos and links on the Ride Ataxia Facebook Page.

NorCal 2011 Registration & Fundraising

2011-03-30T10:28:00.000-07:00

We realize there are a few questions out there about registration and fundraising including: "How did the dallas Ride manage to get 555 riders!?" and "How did the Dallas Ride manage to fundraise $170,000!?"

To quote FARA President, Ron Bartek: "Acting alone there is little we can accomplish. Acting together there is very little we will NOT accomplish." If we all put our shoulders to the wheel, we can combine our efforts to make a huge impact on research for this disease. With that in mind we have created some instructions below to assist you in the registration and fundraising process for Ride Ataxia NorCal (It's pretty straight forward but this post may answer some specific questions). I urge everyone to register and create your fundraising page and send out your link now so your donors will have time to dig deep by the time the ride rolls around.

1. Register for the ride

Go to rideataxia.org/norcal
Click the button at the upper left that says "Register to Ride". This will take you to the Ride Ataxia NorCal Active.com registration page
At the Active.com registration page, click on the green button to the upper right that says "Register Now"
Pick your preferred ride length (If you are registering as a team of 10 to receive the discounted rate, you must choose a team Captain to create the team. After the team has been created each individual team member can register and find the team under the name created by the captain, max is 10 per team for registration), read and agree to the waivers, fill in your date of birth and click "Agree and Continue"
Fill out all your information and answer the questions. One of the questions is about purchasing a jersey. You will receive a free jersey if you fundraise $500 or more (fundraising signup in step #2); in this case there is no need to order a jersey. If you do not think you will reach $500 in fundraising and you still want a jersey you will need to order one for $75. Scroll down and click "continue"
Fill in your payment information and click "Pay Now". Note: Your registration fee and jersey fee goes to FARA; the "Processing Fee" goes to active.com

2. Now that you have registered to ride, you need to create your personal fundraising page...There are two ways to do this.

b. Follow the instructions below:

Go to rideataxia.org/norcal
Click the button at the upper left that says "Donate Now". This will take you to the event fundraising site.
Click on the link in the uper left that says "register"
If you were a participant last year, choose "I already have an account", enter your email and password and then click next (please skip the next bullet). If this is your first Ride Ataxia event choose "I need to create an account" (this is completely separate from the active.com registration) then click "next"
Fill in your information and click "next"
Set your fundraising goal, AIM HIGH! Enter your display name and click "next"
If you would like to create a team choose "Create a team". If your friends have already created a team that you want to join. click "search for an existing team". Note: Everyone on a team will all have an individual fundraising page with an individual total and those individual totals will be combined for the team total on the team page. All team and individual totals will be combined on the event page. Note: there is no limit to the number of people you can have on a fundraising team. If you registered 2 teams of 10 in step 1 above they can all be on the same team for fundraising. If you do not want to join a team choose "Do not join a team". Click "next".
confirm your info and click "next".
you will receive a confirmation email which will take you to your page where you can upload a picture and write a personal message to your potential donors. Here is an example: https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/ranorcal2011/individual.do?participationRef=968.0.347730459
copy the link for your page, paste it in an email or on facebook, twitter...tell everyone about your efforts to help cure FA!

Brilliant Heart Research

2011-03-11T09:26:00.000-08:00

Dr. Subha Raman is one of Ohio State University's best and brightest researchers, in fact in 2010 Ohio State named Dr. Raman their Early Career Investigator Of The Year.

Recently Dr. Raman has proven to be one of FARA's most valuable assets as well. In 2008 Subha received a Kyle Bryant Translational Research Award (KBTRA) to begin her research into the FA heart through Cardiac MRI (the funds for the KBTRA come from Ride Ataxia events!). Dr. Raman's paper (Impaired myocardial perfusion and fibrosis in Friedreich's ataxia: a mitochondrial cardiomyopathy with metabolic syndrome) was recently published in the European Heart Journal and she has applied for more funding from the National Institutes of Health so she can expand her study to include more patients. The goal is to make Dr. Raman's techniques part of the standard care protocol for all FA patients. We could not be more proud of the work Dr. Raman is doing. This is a great example of the power of FARA and Ride Ataxia.

It is known that heart complications (cardiomyopathy) are the leading cause of death for FA patients. Dr. Raman's research aims to catch heart problems early before they become life threatening using a cardiac MRI which can take very clear images of the heart so they can be...I'll just let her tell you:

7th Annual Catrike Rally

2011-03-10T15:33:00.000-08:00

Last weekend I visited some friends at the 7th Annual Catrike Rally and Factory Tour.

All people who own a Catrike (and any other brand of trike or recumbent or anything other human powered vehicle!) were invited to come out to Winter Garden, FL for a ride and a tour of the amazing Catrike factory. One of the many great things about Catrikes is that they are made right here in the US and once a year Catrike invites the public to come check out their manufacturing facility where they bend, weld, and paint aluminum into their outstanding trikes.

On Saturday morning we all (200 people on trikes) met at a park and lined up in 2 different groups for different ride lengths; 15 and 30 miles. It was quite a sight:

When we took off on the ride it was a little overwhelming (in a good way) because I had never been among more than 2 or 3 trikes before and now I was riding in a group of 200!

After the ride we took a tour of the factory and learned the history of Catrike. Right before the tour Paulo (the inventor and CEO of Catrike) made a special presentation. Paulo presented a brand new Catrike Expedition to one of his employees, Sherry, who has been with Catrike as a welder since the very beginning, 10 years. Sherry has built many, many trikes!

After the presentation we toured the facttory and learned just how these machines are made. This is a 700 frame ready to be welded together:

That night Catrike held a reception with presentations from distinguished Catrike riders such as Mr. Giraldo and Bryan Ball from Bentrider. I was lucky enough to be invited to share the Ride Ataxia story:

I highly recommend the Catrike Rally. See you there next year! http://catrike.com

Top Fundraisers

2010-11-07T14:34:00.000-08:00

Ride Ataxia events have funded $960,000 in FA research in the past 4 years. The funding of this research is made possible by the efforts of each individual participant and volunteer. The top Ride Ataxia fundraisers for 2010 to date are:

Margaret Ferrarone - Philly 2010 - $23,188
Angela + Ricky Greene - NorCal 2010 - $10,865
Ed + Lisa Ramsey - Tampa Bay 2010 - $6,775

The top fundraising teams are:

Team Helms - NorCal 2010 - $23,229
The Rupeleton - NorCal 2010 - $17,515
Team Sam Bridgeman - NorCal 2010 - $15,591

Get on the list during Ride Ataxia Southern California on December 4-5, 2010: http://rideataxia.org/socal

Ride Ataxia Southern California - Sunsets and Research

2010-11-04T13:58:00.000-07:00

This is the first time for Ride Ataxia in Southern California. The ride will take place on December 4 and 5, 2010 traveling 80 miles in two days from Long Beach, CA to Dana Point, CA and back.

Bring your camera because the route travels right down the coastline with the pacific ocean in view the entire time. View the route here: http://ridewithgps.com/routes/178490

The ride will be fully supported with volunteers to haul your overnight gear to the hotel in Dana Point and then back to Long Beach the next day and sag vehicles roving the course to provide safety and help with flat tires and other maintenance issues. Rest stops will be fully stocked with everything you need including lots of home baked breads and muffins much like the experience at Ride Ataxia Philadelphia.

The ride also features a ten mile route to allow participation from all levels of riders. The ten mile route will begin and end in Dana point not far from the first day finish of the 40 mile route. View the 10 mile route here: http://ridewithgps.com/routes/202307.

Once in Dana Point, the riders will enjoy a dinner of ribs and all the fixins from Outback Steakhouse. Dinner will be followed by a few presentations that represent the very reason for the ride - Research to treat and cure FA. The presentations will include:

Dr. Susan Perlman from UCLA who will talk about the latest FA collaborative clinical trials at UCLA.

Dr. Giovanni Coppola from UCLA who will be speaking about genetic research in FA.

Drs Ernest M Wright and Vladimir Kepe from UCLA who will be speaking about their work with biomarkers.

Dr. Liz Soragni from Scripps Research Institute who will be presenting on HDAC inhibitors and other new developments at the Scripps lab of Joel Gottesfeld.

Dr. Martin Thoolen from Edison Pharmaceuticals who will talk about improving mitochondrial function and energy production.

As you can see the west coast is a powerhouse of FA research and this power will be represented at the SoCal ride.

The next day riders will ride 40 miles back up the coast to the finish line at Outback Steakhouse in Long Beach.

This is going to be a scenic and fun ride but it always comes back to one thing - raising money to find a treatment and a cure for FA. Lets keep turning that crank!

To find out more and to register for the ride please visit http://rideataxia.org/socal.

Ride Ataxia Philadelphia - A Huge Success!

2010-10-15T16:38:00.000-07:00

The ride was a great success with 400 registered cyclists and over $125,000 raised to support FARA's mission- to treat and cure FA through research advancement. All of the routes were very tough but I know everyone proved something to themselves through participation i n this ride. Thirty of our FA families joined us on bikes and trikes, volunteering at tricky turns, and cheering along the route- marking the day as one of camaraderie and personal triumph. FARA is grateful to Outback Steakhouse for helping us to make Ride Ataxia a truly great event. In addition to Outback's support in ride planning, Outback Steakhouse, Carrabba's Italian Grill, and Bonefish Grill generously donated their time, talent and food to treat participants and guests to a first rate meal following the ride.

The weekend started with pre-registration at Outback Steakhouse where we all gathered and participants could pick up their registration packets so they would not have to find a place for all the great stuff from the bags during the morning of the ride!

That night a group of us gathered to honor Mary Brown and Blair Desaw for the 2010 FARA Friend and Ally Award. Blair handles all the web maintenance for curefa.org and rideataxia.org. Mary is the administrator of our Facebook page. Both peeople spend countless hours making sure FARA communicates well with our community and with the general public. It will take a community to cure this disease and these two are playing a key role in creating that community!

Ride day started early before the sun came up as we set up the park and drove the course to make sure our directional markings were accurate. It was freezing cold that morning!

It started warming up a bit and registration was smooth and orderly as people started showing up and everyone got suited up and ready for a great ride.

The 50 mile ride took off at around 830am with a huge crowd of cyclists.

The 25 miler took off at 915am and the 10 miler left at around 10am. All of the routes were very difficult with nonstop hills which challenged every single participant. There were several hand cycles and trikes on the road which were propelled by the bodies and hearts of Ataxian Athletes one of which was Sam Bode who trained for months to be able to complete this ride alongside her many friends and supporters.

One of the other Ataxian Athletes was Nick Carbone who was riding his new Top End Force handcycle that he received through FARA's 2010 Ataxian Athlete Initiative (AAI).

After the ride, all of the 400 participants enjoyed a huge spread from three of the best restaurants in the business. Outback Steakhouse, Carrabba's Italian Grill, and Bonefish Grill were there to spoil us with tasty treats after a tough ride.

The afternoon also included something for everyone with race cars, fire engines, clowns, face painting and massage therapy.

Everyone had an incredible time and we raised a lot of money for an important cause. Below is a little about that cause. We hope to see you next year!

Once again, thank You to our generous sponsors!

   Presenting Sponsor: Outback Steakhouse

   Headline Sponsors: Carrabba's Italian Grill and Bonefish
   Grill

   Rest Stop Sponsors: Hank's Beverages, Allied Beverage,
   F&F Mechanical, and Sunbelt Coastal Produce.

Special thanks to Bikesport, Tri-County Bikes and Spinners for event SAG

Since FARA's incorporation in 1998, participation in events like Ride Ataxia have supported research resulting in the fundamental understanding of what causes Friedreich's ataxia. While the development of treatments is a labor intensive and costly process, FARA prides itself on facilitating this important work with strategic funding and collaboration. Specifically, FARA has awarded 8 research grants from Ride Ataxia fundraising over the past 4 years, totaling $960,000 in funding for research. All of these grants have supported research with a direct link to advancing treatments; testing drugs in the laboratory, developing cell models that allow us to discover and test new compounds, clinical research such as testing and validating new biomarkers and clinical measures and trials. The two most recent grants were just awarded this month. One is for a clinical trial, a pilot study of a drug that has shown encouraging results in laboratory tests, and the other is for the development of a high throughput screening assay that is needed to discover new drugs in the fight against Friedreich's ataxia.

Teammates in the news

2010-08-01T22:32:00.000-07:00

Check it out: Friedreich's ataxia has no cure, but researchers are working on answers

Team FARA on the News!

2010-06-04T00:43:00.000-07:00

Meet the team, watch the trailer for our documentary, get updates from the road and watch our progress with a live GPS tracker at http://teamfara.blogspot.com.

Inspiration

2010-06-01T19:00:00.000-07:00

I met Marty at a Ride Ataxia fundraiser at my cousin Angela and Ricky's house.

Watch and learn from this guy...

NorCal Review

2010-05-20T18:21:00.000-07:00

We had an amazing ride this weekend!

Our first gathering was at Outback Steakhouse in Gold River for pre-registration on Friday night. Those that could make it picked up their tshirts and jerseys and signed the necessary waviers. This event gave participants the opportunity to get the business out of the way to make room for all the fun of the next couple days.

In the morning, registration opened at 630 at Negro Bar State Park.

We hung out and ate from a huge spread provided by Sodexo/University Dining Services and many of their partners, in fact all the food at both breakfasts and all the rest stops was provided by these folks. Sodexo partners include: Kellogg's, Fresh Point, General Mills, Nature Valley, Dasani, Naked Juice, Kashi, Yoplait, Sysco, Powerade, Coca Cola, Clif Bar, Heinz, McCain, Mission, Pepperidge Farm, John Morrell, Michael Foods, Gatorade, Dawn Food Product, Bimbo Bakeries.

After some safety and logistics information, the 2 dayers left for their uphill 50 mile trek between 730 and 8am. The 25 milers left between 10 and 1030 and the 10 milers left between 1030 and 11.

The 25 mile route started out with a gradual incline to the top of the dam and featured a rest stop at Beal's point right on the lake before it took off and winded through some country roads and a subdivision on Oak Hill. Oak Hill was the tough climb on the 25 mile route but everyone made it!

The 10 mile route looped around Lake Natoma and was set up for the whole family which proved to be a great feature of this event.

Above: Dylan (left) and Jason Helms. The Helms family came from Montana to join the fun and support FARA who is working to find treatments and a cure for Dylan and many others.

The 10 mile route also included a pedicab which allowed FAers to join the ride with the assistance of an able bodied rider.

Above: Brianne Konanz rides with the rest of the team including her sister Cheri, Dad Paul and Brother-in-law Doug.

The pedicabs were a great addition to a great day and were loaned to us by the Folsom Area Bicycle Associates (FABA), thank you! We hope to expand the pedicab initiative to other rides and more pedicabs in the future!

After the 10 and 25 mile routes, the participants enjoyed a much deserved lunch catered by Outback Steakhouse.

The two day 100 mile route was amazing, and much of the credit must be given to Mother Nature. We had a beautiful ride that winded through country roads, across rivers and UP MOUNTAINS! There's no doubt it was a tough ride with 5,000 feet of climbing the first day and 3,000 feet the second day. Many people were under the impression that the second day would be all down hill...not so. The second day had much less climbing but every hill was super steep (perhaps everything just seemed steep because we were on the second of two tough days).

Regardless of the difficulty everyone had a great time challenging themselves and we all felt very supported with plenty of vehicle support and fully stocked rest stops.

On Saturday night we all gathered in the Northern Mines building at the Nevada County Fairgrounds and enjoyed ribs, chicken, potatoes, vegetables and cake catered by Outback Steakhouse while we listened to speeches by Lisa Swarthout (Mayor of Grass Valley), Steve Davis (Bicycle Recycle Program), Me, and Jen Farmer (Executive Director of FARA). The evening was very powerful because it allowed over 200 people to sit down and enjoy each other in unity for a great cause.

After the banquet, everyone either retreated to their tent or gathered on the hill for a campfire. I slept outside under the stars and Mother Nature provided me with perfect sleeping conditions.

In the morning (Sunday Morning) we gathered for breakfast once again provided by Sodexo/University Dining Services and their partners while we were packing up tents and gathering gear to go in the luggage trailer. At that time we also gathered for a group photo which was truly amazing.

When I was first diagnosed with FA, my family and I felt very alone, we had no idea what the future would hold and to experience all these people gathering to support the cause was an amazing thing. We are all in this together! Thank you, friends.

While we had everyone together we paid a little attention to Team FARA in Race Across America. Starting June 12, the guys pictured below (Right to left: Me, John Lockwood, Sean Baumstark, Mike Mellott) will ride 3,000 miles from Oceanside, CA to Annapolis, MD in less than 9 days. Learn more at and track our progress at teamfara.blogspot.com or watch the trailer for our documentary at theataxian.com.

After the group photo we took off for our second day on the road.

The ride Ataxia NorCal Team consisted of 200 riders and 75 volunteers who helped raise $100,000 for a disease that has no treatment, no cure, no hope...until now.

Thank you once again to Outback Steakhouse for the support at lunch and dinner. Thanks to our jersey sponsors, Edison Pharmaceuticals and Brown and Caldwell and thank you to our rest stop suppliers and volunteers including Sodexo, Kellogg's, Fresh Point, General Mills, Nature Valley, Dasani, Naked Juice, Kashi, Yoplait, Sysco, Powerade, Coca Cola, Clif Bar, Heinz, McCain, Mission, Pepperidge Farm, John Morrell, Michael Foods, Gatorade, Dawn Food Product, Bimbo Bakeries.

See you next year!

Radio Promo

2010-05-10T18:17:00.001-07:00

Hey Folks. I was on the radio this morning talking about Ride Ataxia and Team FARA. Click HERE to listen.

NorCal

2010-05-08T23:52:00.000-07:00

I have not posted in a while because I have been busy with my team preparing for the NorCal Ride. The big day is only 1 week away and things are coming together in a big way! We will have 200 riders split up among the 10, 25 and 2 day 100 mile courses and our fundraising is approaching $100k. The fundraising website does not reflect this total because there are a lot of funds that are on their way in such as $20k from the Helms' event in Missoula Montana, $6k from the Froling fundraiser in Grass Valley, CA and $3k from the Prater event in Chico, CA plus all of the donations that will come in this week! I still think we can make it to our goal of $170k, there is time, lets make it happen!

There is also still time to sign up to participate! We have something for everyone and the food on this ride is going to be ridiculous. All the food at the rest stops will be provided by the following: Kellogg’s, Fresh Point, Sodexo, General Mills, Nature Valley, Dasani, Naked Juice, Kashi, Yoplait, Sysco, Powerade, Coca Cola, Clif Bar, Heinz, McCain, Mission, Pepperidge Farm, John Morrell, Michael Foods, Gatorade, Dawn Food Product, Bimbo Bakeries. And the lunch for the 10 and 25 milers plus the dinner for the 50 milers will be provided by Outback Steakhouse...need I say more. You will not go hungry on this ride.

Special Thanks also to our two main sponsors Brown and Caldwell Engineers and Edison Pharmaceuticals!

This week is going to be insane with Event Tshirts and participant information packets and volunteers and coordination meetings and Tess and Camping Gear and DJ's and high profile speakers like Jen Farmer (Executive Director of FARA) and Lisa Swarthout (Mayor of Grass Valley) and Training and route marking etc...I will try to post again this week but no promises.

See you at the ride!

For more info visit rideataxia.org/norcal

Tampa Bay Effort on the News!

2010-04-13T03:40:00.000-07:00

Wanted to share this before we hit the trail here in Tampa Bay!

Ride Ataxia Listed on Top 50 Walk/Bike/Run Events

2010-03-31T12:11:00.000-07:00

Ride Ataxia was listed as one of the top 50 Walk/Bike/Run events by Travel Insights 100. Check out the entire list here.

Travel Insights 100 is designed to be a forum where a diverse set of travel leaders can share their points of view. It is a platform for discussion, based on research, with thought leaders in travel & tourism around the world.

Amendment to the 2010 Ataxian Athlete Initiative

2010-03-29T13:40:00.000-07:00

Please note that the following has been added to the Ataxian Athlete Initiative:

If you decide to purchase cycling equipment during the time you are filling out the application we will honor that purchase for use with the money you may receive from the grant. However, there is no guarantee that you will receive the grant so be prepared to handle the cost if you are not chosen to receive funds.

2010 Ataxian Athlete Initiative

2010-03-17T14:11:00.000-07:00

March 10, 2010- Part of the mission of Ride Ataxia is to "EMPOWER Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength." Through the 2010 Ataxian Athlete Initiative, Ride Ataxia will fund the purchase of adaptive cycling equipment for aspiring Ataxian Athletes so they may start their personal Ride Ataxia Adventure.

The Ataxian Athlete Initiative (AAI) is brought to you by Ride Ataxia, a FARA Program. The 2010 AAI is funded by a Quality of Life grant from the Christopher and Dana Reeve Foundation. The funding from the Reeve Foundation will allow the AAI to provide multiple awards in 2010.

AAI is administered through a grant application process. Individuals must have been diagnosed with some form of ataxia to qualify. The AAI is available to Ataxians worldwide. A complete application must be submitted by July 1, 2010 to be considered for an AAI grant award.

As part of the application individuals will select the most appropriate adaptive cycling equipment to suit their abilities and aspirations. In addition, applicants are asked to submit both general and financial information as well as an essay summarizing their experience with Ataxia and their fitness goals.

All applications will go through a formal review and selection process. The applications will be reviewed by a panel of Disabled Athletes, Ataxians, and other representatives of the ataxia community. To find out more and for application instructions go to: Ataxian Athlete Initiative 2010.

NorCal Jersey

2010-03-05T15:31:00.000-08:00

Check out the jersey design for Ride Ataxia Nor Cal! You will earn a free jersey if you register for the ride and raise $500 or more. Teams of 10 that raise $4,000 or more will receive one free jersey per rider. Once you register you will be given instructions for how to set up your personal fundraising page which you can customize with a picture and a personal message. All fundraising dollars will be used for research to find a cure for Friedreich's ataxia!

Radio Blog

2010-03-04T22:11:00.000-08:00

Hi everybody. I did a couple promotional gigs this week including a radio interview with a station here in Sacramento. The 20 minute clip will air this weekend but you can read a little bit here: Ride On

Front Page

2010-02-26T14:59:00.001-08:00

Check out this article from the Grass Valley Union that made the front page this week: Crusade for a Cure

Ultra FARAthon!

2010-02-19T13:44:00.000-08:00

Hey folks,

I came across this story the other day about a woman who is going to run a 7 day Ultra Marathon in the desert to benefit FA.
Her name is Marilena Wilkinson and here are a couple pieces of her website:
"By participating in the Atacama Desert Ultra Marathon, I will be attempting to cover 250km across some of the most inhospitable terrain in 7 days. A-marathon-a-day is an obvious comparison; but it is much more than that. It has been described as one of the toughest, most gruelling ultra-distance events in the world.
Extremes in temperature, climbs to heights in excess of 10,000ft, and long stretches of energy sapping salt-flats might just give you an idea of what I am committing myself to do.

The main thing, though, is that I am doing it for a wonderful and most worthy cause, which I do hope you will support. Friedreich's Ataxia (FA) is a cruel disease of which there is no known cure. It is a debilitating, life-shortening, degenerative, neuro-muscular disorder.

I have watched its cruel and relentless progress affect the health of the daughter of my very good friends in Hong Kong, Angelo and Monica Pepe. Angelo worked tirelessly raising funds for research into the disease, and spent lots of his own money too. Sadly, Angelo succumbed to cancer at the end of 2008, and, before he died, I promised myself that I would try and help towards his work, and raise money for research in the hope that a cure can be found.

The charities for which I will be raising money are Ataxia UK and Friedreich's Ataxia Research Alliance (FARA). FARA is a non-profit, tax-exempt organisation dedicated to curing FA through research, pharmaceutical/biotech drug development, clinical trials and scientific conferences."

View marilena's website HERE.

Two New Rides!

2010-02-15T11:38:00.000-08:00

FARA Presents

Ride Ataxia Tampa Bay

and

Ride Ataxia NorCal!

Hello Cycling Enthusiasts!

FARA has two new reasons to look forward to the spring cycling season!

The FARA staff has been hard at work for the past several months in order to bring you two challenging and family fun cycling events in the spring! So it is time to tune up that bike that's been in the garage all winter and start riding because registration is now open for Ride Ataxia NorCal and Ride Ataxia Tampa Bay!

Ride Ataxia Tapma Bay

In partnership with the Outback Steakhouse Golf Tournament, Ride Ataxia Tampa bay will take place on Tuesday April 13 along the Suncoast Trail in sunny Tampa Bay, Florida. The ride will feature something for everyone with 10, 25, and 50 mile routes. The Suncoast Trail provides a safe, inviting, scenic atmosphere for a family ride. All three routes have a relatively flat elevation profile which will allow participation from all ability levels.

FARA will be one of the benefiting charities at this year's Outback Steakhouse Pro-Am Golf Tournament andRide Ataxia is one of a handful of events leading up to the tournament. Registration for the ride includes entrance into the Golf tournament on the weekend following the ride.

To find out more details, register for the ride, and make a donation please visit our event site at http://rideataxia.org/tampabay.

Ride Ataxia Nor Cal

On May 15 and 16, 2010, participants will ride 100 miles in 2 days along the scenic Foothills of Northern California from Folsom, CA to Grass Valley, CA and back. The ride will also include 10- and 25-mile routes allowing participants of all abilities. FARA expects over 400 participants ranging from beginners to expert cyclists, families, FA patients, and dedicated supporters.
Locally the event falls on the same weekend as the start of the Amgen Tour of California; one of the country’s most popular professional bicycle races which will bring Lance Armstrong and Levi Leipheimer as well as many other pros to the area. Ride Ataxia will provide the opportunity to ride some of the same roads as the Amgen Tour of California the day before the pros race through.
To date, Ride Ataxia has helped bring together $830,000 for FA research and will pass the million dollar mark with the efforts from each participant during the Nor Cal ride. The goal for this event is to raise a total of $170,000.

To find out more details, register for the ride, and make a donation please visit the event website at http://rideataxia.org/norcal.

FARA has Ride Ataxia events planned for Philadelphia and Southern California in the Fall of 2010!

Neurology Now!

2010-02-12T15:24:00.000-08:00

Friedreich's Ataxia was featured in a major medical journal this month, Neurology Now! When they mention Repligen Corporation they are talking about work that was funded by a Ride Ataxia Grant! We are truly making an impact!

A piece of the article-
"There is promising news on the horizon for people with Friedreich’s ataxia, a neurological disease that causes progressive muscle weakness, difficulty walking, slurred speech, and heart problems. The discovery of the mechanism for a potential drug treatment was reported in the September 25, 2009 issue of the medical journal Chemistry & Biology.

A team of researchers led by Joel Gottesfeld, Ph.D., professor of molecular biology at the Scripps Research Institute in LaJolla, CA, discovered the specific enzyme target of a compound called 4b that stops the progression of the disease in mice. Dr. Gottesfeld’s team discovered the compound three years ago but didn’t
know how it worked. Now, having identified the particular enzyme that 4b blocks, they are developing targets for treatment."
Read the entire article here: http://curefa.org/_pdf/NeurologyNowJan2010.pdf

The Picture-
Note: This picture was taken by Rick Guidotti representing his organization Positive Exposure. Through an unfortunate mix up the credit was given to my friend Blake Andrews at SLOTography. Sorry Rick, this one worked out in Blake's favor!

The Art of Cycling In The Rain

2010-02-04T08:49:00.000-08:00

My friend Blair at The Sacramento Bee just published an article about winter cycling. Blair and I often pass each other on the bike trail so he called me up to get some comments about riding in Sacramento in the winter. Below are a couple tidbits from my input into the story. To read the full article click here.
"We have an absolutely beautiful trail out there," says Kyle Bryant, who has the inherited disease Friedreich's ataxia, which weakens muscles, vision and hearing, and is life-threatening. He rides a three-wheel recumbent bike to help him with balance and is a regular presence on the American River bike trail.
"I just like getting outside. It's painful to be cooped up. You feel like your muscles are going stale all day," he says. "It's tough for the first 15 minutes getting warmed up, but at the end, you feel like you're ready to conquer the world."
...
Bryant says waiting too late to achieve springtime fitness can lead to injuries.
"You need to start riding now. I developed knee problems in the past that resulted from riding too hard in a short amount of time," he says. "I had those problems when I was a total beginner cyclist."

Keith Michael Andrus: 12/21/1985 - 1/22/2010

2010-01-23T22:47:00.000-08:00

Dear Friends,

We, at the Friedreich's Ataxia Research Alliance (FARA), are deeply saddened to inform you of the passing of Keith Andrus on January 22, 2010. Keith was the beloved son of FARA President Ron Bartek and his wife Raychel. Keith's diagnosis of Friedreich's ataxia inspired Raychel and Ron to pick up that torch, joining him in his fight, and found FARA. Even during the final and very challenging months of Keith's life he courageously continued to not only advocate for himself but for others with FA as he left no stone unturned exploring advanced and experimental treatment options. Keith also made the decision to make the ultimate contribution to research at the end of his life with the donation of his tissues so that research will continue. Because of Keith many thousands have hope for a treatment for FA. Thank you, Keith.

We often quote Ron as saying, "Acting alone there is little any of us can accomplish whereas acting together there is little we will not accomplish." These words are deeply rooted in the FARA culture- the way we pursue treatments and a cure for FA, and today they also serve as a source of comfort in this time of great sadness. While our hearts break for the Andrus/ Bartek Family, we feel the collective strength of our greater FA family. You stand beside us in our work every day. You hold us up. You push us forward. In this time of grief, you are present and our commitment to and sense of urgency for the FARA mission does not waiver.

If you wish to extend personal condolences to the Barteks, you can do so by mail at: 4505 Wakefield Drive, Annandale, VA 22003 A memorial service will be held on Saturday January 30, 2010 at 11am at St. Matthew's Methodist Church, 8617 Little River Turnpike; Annandale, VA 22003-3604. At Keith's request, FARA has established a memorial fund, designated to cardiac research in FA, for contributions made in Keith's memory.

We are grateful to Ron, Raychel and Keith for making their journey with FA into a greater alliance of families and for the FA research progress born out of that alliance.

Sincerely,

The FARA Board of Directors & Staff

FA Cardiac Study

2010-01-22T09:51:00.000-08:00

On my way home from Philadelphia earlier this week I stopped by Ohio State University in Columbus Ohio to participate in the Cardiac Study with Principal Investigator Dr. Subha Raman. This study uses a cardiac MRI to take very accurate pictures of the heart. The purpose of the study is to develop a protocol for detecting common signs of cardiomyopathy (the condition that shortens the life of an FA patient) in FA. Little is known about cardiomyopathy in FA because there has not been an accurate way to track it...until now. With this new technique, cardiomyopathy can be detected in early stages and can be treated with common, established treatments.

This study was one of two ($120,000 each) funded by the proceeds from Ride Ataxia II.

I showed up to the Medical Center and was greeted by the smiling face of Beth McCarthy (Dr. Raman's research coordinator). I got checcccked in and we headed back to the prep room. There was a team of four other nurses in the room to wait on me and make me feel comfortable. The first thing was to get into some more comfortable ccclothes so they gave me a robe and some pajama bottoms to change into. Once I was changed, they told me to laaaay back and they got started. First, one of the nurses shaved three patches out of my hairy chest so they could find skin to put some little sticky electrodes (maybe I should just shave it all off).
Then another nurse put two IV's in my right arm (she said I have nice veins and I called her a vampire, she gave me an affirmative shrug). Ine of the IV's was for the injection of a drug that causes the blood vessels to expand temporarily so they can see the vessels more clearly. The other IV was for a "contrast agent" which helps the MRI machine see the blood vessels in contrast to all the other stuff on the inside.

After I was all poked, prodded, and prepped I got in a wheelchair and they transported me over to the room with the MRI machine. As we waited for our turn to use the machine Dr. Raman sat down with me to chat about the study. One of the things that stuck out to me was that this technique is very accurate and the results are easily reproduceable. Often times in a research study the results have a lot of variability so it takes a large number of participants to produce statistically significant results. The MRI technique used for this study is produces dependable results that not variable and can be reproduced easily.

When the machine became available, we rolled in to meet another two technicians that were there to monitor the process. I transferred to the little sliding bed which would carry me into the machine and they got me all hooked up to wires and IV's again.
The scan would take 45 minutes but I wore headphones for communication with the technician and the headphones played music so I didn't have to listen to the loud, strange noises coming from the huge machine that surrounded me. About 20 minutes in to the process, the technician informed me that they were going to inject the drug that would enlarge my veins, she told me that my heart rate would go up, my chest might get a little tight and my breath might get short. The injection went in and I felt all the symptoms but they were not half as bad as they were hyped up to be. That was the most uncomfortable part of the process...piece of cake!

They removed me from the MRI machine at 11:55 and I was supposed to be speaking at noon. So we rushed back to the prep room where I was hooked up for one last EKG before I quickly changed and headed out to address the members of Dr. Raman's team. During my talk to the group I let them know that we (the FA community) are their biggest fans and we aare in awe of their brilliant and capable minds. I let them know that the funds for their research came from a patient driven fundraiser which makes it all a little more meaningful. I let them know that they awre now part of a strong team that consists of patients, doctors, pharmaceutical companies, academic institutions etc. with the common goal to CURE FA.

Once again I felt empowered by participating in this study, especially knowing that this study operates from money raised during Ride Ataxia II.

Eventhough they pay each participant $100 (cha-ching), for me the main perk of participating in this study is that I have the best heart doctors in the country looking at my heart specifically for things that are caused by FA. There are lots of good cardiologists out there but OSU is the only place (so far) that offers such a close look at things that could potentially be wrong with a heart affected by FA.

To find out more about this study and to inquire about participation, please check out the recruitment notice.

Research Study at Dupont Childrens Hospital

2010-01-18T16:22:00.000-08:00

Last Monday I took a trip over to Dupont Childrens Hospital in Wilmington Delaware where they are doing a study on hearing for people with Friedreich's ataxia. The purpose of the study is to examine if measures of auditory, speech and vestibular (definition of vestibular: Having to do with the body's system for maintaining equilibrium) could be used as potential appropriate scale for future trials. In other words, they are trying to figure out if hearing and balance can be sufficient means to track the progression of the disease so that when we are trying to determine the effectiveness of a potential drug, we can run these tests before and after treatment to determine if the drug is doing what we want.

So I showed up at the hospital and the receptionist was a little confused because I said I have an appointment (their patients usually don't have facial hair). But I found who I was looking for, Shanda Mortlet who I would hang out with for the next couple of hours (lucky for me she is super cool and we had a pretty good time). Shanda brought me into this tiny, sound-insulated room and sat me down at this mini desk with Pluto and Mickey on it. I sat down and got comfortable while they hooked me up to the machines that would test my ears and "vestibular" attributes. This is what it looked like when I was all hooked up:

Please do not be alarmed by the look on this face, Kyle was not harmed in the procedures of this research study. Shanda accidentally pushed the button too soon and this is what came out, I think its kinda funny.

So I sat at my mini desk for a bit while beeps and humms were played in my ears and Shanda was glued to her little readout making sure we were getting good results. Then Shanda left the room and I pushed a button when I heard a beep. The entire study was completely painless...my favorite part was trying to tell if there was one beep or two, I'm really good at that one.

As a patient it is one of my greatest roles to be a participant of research studies because without data we cannot get treatments approved and we are left without hope.

It is very empowering to me to be able to directly contribute to a study like this because these are the kinds of efforts that are all pieces of the puzzle. The insights gained here will help us understand the disease a little more so we know more about how to attack it. This is one of many studies that will help us push toward the finish line; a cure for FA.

If you have FA and are interested in participating in this study please check out the recruitment notice. We need 30 participants and I was number 6. FARA recently gave a grant to this study to help cover travel costs for participants so check it out!

Penwest

2010-01-10T13:11:00.000-08:00

Last Friday I gave a presentation to Penwest Pharmaceuticals. The purpose of my visit was to let them know that we are grateful for the work they have done on A0001 (alpha-tocopherolquinone, a compound similar to Coenzyme Q10, this drug is designed to improve mitochondrial function, specifically the way glucose is converted to energy, which is often impaired in individuals with FA). My purpose was also to relay the feeling of urgency that is pulsing through our FA community.

During my talk I gave them an overview of my story with some photos and stories to go along with it. I let them know the extreme measures our community is willing to take to cure this disease. I let them know that they are part of our community and we have one goal, to cure FA. At one point, the CEO of Penwest, Jennifer Good stood up and added to my comments making sure that her people know that FARA has been involved in A0001 from the beginning and has pushed things along to make the process as efficient as possible. She reiterated the point that every moment counts when we are talking about a progressive disease and she encouraged everyone to think about why they are doing what they do. I was pretty pumped to hear Jennifer's comments and I am confident that Penwest is working hard to push A0001 along as quickly as possible.

After my talk they gave me a tour of their operations. Tony showed me the labs where they formilate the drugs, make sure they dissolve correctly and ensure that the correct dose will be delivered over the correct period of time. He also showed us a section of the lab where they actually assemble pills starting with solids or liquids. Below is a picture of me and Tony in a section of the lab where we had to put on lab coats, hair nets and little cloth booties, it looks like we are ready to serve some Sloppy Joes !

After the tour we all sat down for some lunch to talk about the upcoming rides and how they might be able to get involved. They are forming the Penwest cycling team and plan to join us on our upcoming rides!

Thanks for allowing me to share my story, keep up the good work, we are rooting for you!!

If you have FA and would like to find out how to participate in the A0001 clinical trial check out the recruitment notice.

If you want to find out more about Penwest and A0001 check out this press release.

Blake and Dan

2009-12-17T20:39:00.000-08:00

Two dedicated Ride Ataxia teammates share their thoughts...

Progression: A balancing act.

2009-12-04T17:41:00.000-08:00

FA is a progressive disease which means it gets worse over time. This makes things especially challenging because there is a constant balancing act between pushing oneself in order to maximize one's physical abilities and giving in to reason and comfort.

For example, I am in a transition period between walking and cruising in my wheelchair. Whenever I leave the house I have to assess the situation and decide whether or not things will be easier with the wheels. I have to consider the terrain I will be in, the time frame of whatever I am doing, the people that will be there, the activities that will take place, how I am feeling at the time etc.

After taking all these things into consideration I place them on either side of a scale. On one side of the scale are all the reasons why things might be easier with the wheels. On the other side of the scale is one thing: The fact that the more comfortable I get in the chair, the more time I will spend there.

to be continued...

FARA West

2009-11-23T09:06:00.000-08:00

The FARA West Open House was yesterday and we had a huge turnout! We had 50-60 people in my 900 square foot house. We are all glad it was not raining because most of the people hung out outside where there was enough room.

The crowd consisted of our dedicated supporters from my home community, Lake Of The Pines. There was also a strong showing from the Krill clan, see you guys Wednesday night! And as always there was a strong showing from my aunts, uncles and cousins. Uncle Steve even showed up. He drove all the way down from Libby Montana and I had no idea he was going to be here until he walked up the driveway!

It is evident that FARA has huge support in the Sacramento area and the entire west coast so lets get to work and raise some funds for research!

Edison

2009-11-21T22:07:00.000-08:00

I had an amazing experience at Edison Pharmaceuticals yesterday. Edison is focused on improving mitochondrial function and they have some amazing things on the horizon. I spent some time with their team and they seem extremely driven and focused, I had a great time.

Tomorrow is the open house for the new FARA office (my house) and should be a lot of fun. I'll let you know how it goes.

Philly Review

2009-10-27T14:34:00.000-07:00

Wow, what an event! Last week was one of the most tiring and most rewarding weeks of my life!

Each night the preparations kept us busy until midnight and we started each day early so we could get a jump on all the issues. In the end the event was a huge success with 350 riders who helped to raise over $100,000 for research!

We raised about $55,000 online and the Northeast PA area Outback restaurants raised $41,000. We surpassed the $100,000 mark with the generous support of our sponsors such as Outback Steakhouse, Carrabba's Italian Grill, Bonefish Grill, Hank's Beverages, Allied Beverage, G&R Mechanical, F&F Mechanical, Faraco Knife and Slicer Co., Santhera Pharmaceuticals, Miller Coors, Heineken, and Dr. Holly Hedrick.

Ride Day started at 730am with registration where everybody was able to gather and meet before the ride started.

The 50 mile riders hit the course at about 845am and encountered a tough course. It was up and down all day, for me it was either 25mph downhill or 4-6 mph uphill. This was a consistent theme for all the ride lenghts (10mi, 25mi, 50mi) so we suffered through the symbolic up and down journey and the first riders came in at about 11am,

then the food started coming out! Outback, Carrabba's, and Bonefish cooked up Fish, Steaks, Mashed Potatoes, Greens...this stuff never tasted so good!

While the riders were out on the course there was a ton of activity back at the park. The kids enjoyed a bike loop around the park, crafts, moon bounce, face painting, and hay rides by horse drawn buggy.

I think this ride had a little something for everyone. The course was very challenging even for the experienced riders but there were shorter options which helped get everyone involved. The festival activities kept the kids busy allowing playtime for Mom and Dad. And the food was second to none!

In the end this ride had huge participation from many people who had never heard of FA before and we raised a huge amount of money. Awareness and fundraising are the key ingredients to finding a cure for this rare disease, we are on our way to a cure!

Feedback
"It was a great day, the ride was challenging, but rewarding, The food was amazing!!!!!! The hard work from all of the volunteers was amazing, the markings for the ride were phenomenal. I will definitely do this ride next year!!"
"It was a privilege riding in the Philly ride for such a great cause. Learned alot about FA and met some truly inspirational people. Hope to do it again next year."
"Food - great, who gets such a meal at a bike ride!?
Family events - kids had a great time and did not want to leave, bikes are still decorated
Course - hard but good that it was hard, somehow symbolic"

Find more pictures and reviews on the facebook FARA Fan Page.

Success in Philly!

2009-10-25T19:30:00.000-07:00

Today was a huge success. We were hoping for 250 riders, we ended up with a total of 370 and when the final talley is made we will have more than $100,000 for research. We are one step closer to the goal!

More details and pictures to come.

Ride Eve

2009-10-24T18:53:00.000-07:00

Tomorrow is the beginning of something huge. It is our first large scale ride with particiation from the general public. It is the first of many to come and we are off to a great start with 270 registered participants and we expect to be over 300 with day of registrants. This is huge for awareness and fundraising. We are confident that the cure is out there, it will just require money and time. Together we can make a huge dent in the money and then it's just a matter of time. I'll see you at the finish line!

Publicity

2009-10-22T19:57:00.000-07:00

We shot a TV spot earlier this week and it aired today. PHL 17 did a great job and Dr. Lynch knocked it out of the park in his interview, we are all glad that he spoke slowly when answering the questions.

Our registration list is up to more than 250 riders. See you Sunday!

Three days left

2009-10-21T21:14:00.000-07:00

Today we drove the route one last time to scope out the water stops one last time. Tonight we asssembled the route signs while we watched the Phillies win the National League Championship. Three more days of prep until game time for Ride Ataxia Philly!

2009-10-20T19:47:00.000-07:00

This morning started with a visit to the FARA office in Exton, PA. Shortly after I arrived Juliann showed up to take the trek down to the channel 17 TV station. We met the guys at the station and then followed them out to a park that had a nice view of the Philly skyline. We shot a short interview and then some shots of me riding. They are going to interview Dr. David Lynch (Dave) tomorrow to get the scientific side of the story and then they will put it all together to paint the whole picture.

When we finished at the park, Juliann and I went to get some lunch downtown at Reading Terminal Market which was a huge warehouse of small shops selling fresh vegetables, meats, spices and all kinds of lunch food including these cupcakes to celebrate the Phillies' win last night.

After lunch we went to visit the Outback Steakhouse team who is going to help us in producing the event on Sunday. We spoke a bit and tried to convey to them how much their support means to us. This is truly going to be a first class event due in large part to the support provided by Outback!

Then we went out to dinner for FELICIA's (FARA program director) BIRTHDAY! HAPPY BIRTHDAY FELICIA!

Made It

2009-10-19T21:41:00.000-07:00

I made it to Philly and my trike is in one piece and fully assembled, small victory! Just watched the Phillies beat the Dodgers! TV taping in the morning! I am posting from my iPhone and need to get to sleep but I hope to do a more detailed post within the next couple days.

Travel Prep

2009-10-18T17:52:00.000-07:00

I am starting to see the light at the end of the preparation tunnel for the Philly Ride. It is down to the last minute stuff: I am about to apply the last coat of tape to the custom trike box, I just printed out my boarding pass and the last load of laundry is almost done, the packing is almost complete!

Next week is going to be nuts. I arrive in Philly at 9pm and I am staying at Jen Farmer's (FARA Executive Director) house. If I feel up to it I would like to try to assemble the trike that night because we need to have it with us for a taping for a TV show on Tuesday morning (details and airtimes will come in the next couple days). Tuesday evening Felicia (FARA Program Manager) and I are going to visit an Outback Steakhouse team who will be helping us with the ride and without them the ride would not go on. The next few days will be a firedrill of last minute details for the ride along with hanging out with Philly friends that I haven't seen for a while. Then THE RIDE is on Sunday! I am stoked that we have so many participants (around 200!) and I am crossing my fingers for good weather. The weather will be a small factor in the success of the ride. We will ride with purpose no matter what Mother Nature throws our way! See you there!

Linda

2009-10-16T23:27:00.000-07:00

“So I go on, challenging myself in new ways that are more fulfilling than I think I would have if I didn’t have FA.”

Who am I? I am a 46-year-old woman, wife who is still infatuated with her husband, mother of two fun children, full-time employee at a very accommodating company, world traveler, book club member, dinner club member, church-goer, live in Central New York in a comfortable 100-year old house in the country with my family, dog, cat, rabbit, and chickens … and, oh yeah, I have Friedreich’s ataxia.

Life changed when I was diagnosed with FA at the age of 40 … just six years ago. That’s when I really started to appreciate the time we have. I have always been a bit “Carpe diem,” but there’s nothing like being diagnosed with a progressively debilitating disease to get you moving!

I took a new position at work that required/allowed me to travel internationally. On several occasions my family joined me in Europe during the summer break. The motive for traveling internationally was at first pragmatic … I should do it as soon as I can, before my symptoms make it too difficult. But it has proven to be such a positive experience for us all!

In the beginning of 2008, my husband Andy and I joined Kyle Bryant and others on Ride Ataxia II. It was certainly a life highlight that I would not have even thought of doing prior to FA! Not only did we all raise a lot of money for FA research, but it was so motivating to physically accomplish so much! We had never done anything like this before, and we were thrilled to be a part of it!

So I go on, challenging myself in new ways that are more fulfilling than I think I would have if I didn’t have FA. My mantra, quoted from Abraham Lincoln, is “And in the end, it’s not the years in your life that count. It’s the life in your years.” I encourage everyone with and without FA to live in this way!

Valuable Cardboard Box

2009-10-15T22:07:00.000-07:00

Tonight we finished constructing the bike box and it just needs to be taped up after I stuff a few more things in there for padding.

First of all, earlier in the day I went out and bought a bunch of pipe insulation (foam padding) and some packing materials to pad the bike before we built the box around it. The picture below is a bit dark and blurry so let me describe it: A heap of bike parts with foam padding on all the sharp edges.

Then we folded the whole thing up in the two combined boxes. We used smaller (shoe) boxes to fill some of the voids between the bike and the outer box. We used a lot of tape but it is going to require a lot more! Here is our final product:

Overall I am pretty confident in our packing job but the safety of the trike all depends on how the luggage handlers treat it. If there are any luggage handlers out there reading this, please be gentile!

More Packing

2009-10-14T22:38:00.000-07:00

Tonight we (Me and Andy) fully disassembled my trike and began constructing the box that it will fit into. It took us a couple hours and we put quite a bit of thought into the construction of the box before we made any cuts.

First we removed the front tires and the boom and folded down the handle bars. I realize it just looks like a heap of bike parts but we'd like to think there is a method to the heap:

Then we removed the rear wheel and rear derailleur. We boxed up the derailleur and taped it to the frame because we figured it is the most fragile piece:

Then we measured the whole thing a couple times before we made the cuts for construction of our oversized bike box. We are combining two bike boxes to make one large box:

So the outcome of the evening is the pieces of our box and a heap of bike parts. Tomorrow night we will put it all together.

One Concern:
Our finished product will be approximately 62"x27"x14" (103" length+width+height)and I'm not sure how it will fare within the Southwest Airlines baggage policy.

Here is the policy for bicycles:

"Non-motorized Bicycles, including Bike Friday and Co-Pilot, will be accepted in substitution of a free piece of checked baggage at no additional charge provided the bicycle is properly packaged and the box containing the bicycle fits within the 62-inch sizing limit and weighs 50 lbs or less . (Maximum weight is 50 pounds and maximum size is 62 inches (length + width + height) per checked piece of luggage). The handlebars, kickstand, and pedals must be removed and placed inside the box. A $50.00 each-way charge applies to bicycles that don’t meet the above criteria. Bicycles packaged in a cardboard box or soft-sided case will be transported as a conditionally accepted item."

The above makes it sound like everything's cool as long as I pay $50. However there is this:

"Weight and Size Allowance: Maximum weight is 50 pounds and maximum size is 62 inches (length + width + height) per checked piece of luggage. Effective June 17, 2009, overweight items from 51 to 100 pounds and oversized items in excess of 62 inches but not more than 80 inches (e.g.; surfboards, bicycles, vaulting poles) will be accepted for a charge of $50 per item."

The 80 inch max makes me a bit nervous...I'll give them a call tomorrow and I'll make sure to ask about my vaulting pole while I have them on the line.

Ride Ataxia Research Funds

2009-10-13T20:54:00.000-07:00

Its payoff time! Now is when we can see the tangible impact of the Ride Ataxia efforts! Today FARA and NAF announced funding of the 4th, 5th and 6th Ride Ataxia research grants. Funding of these three grants brings us to 6 grants totaling over $700,000 in three short years. With this announcement we can clearly see the difference that is made with our combined efforts. This research will advance potential treatments toward clinical trials so that they will soon be available for patients like me and many of my teammates. This research provides hope to all who are searching for a cure and we are all a part of that hope with participation in Ride Ataxia either as a donor, rider or volunteer.

Press Release:
The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that, this year, they are co-funding two $120,000 Kyle Bryant Awards that are going to promising translational research in Friedreich’s Ataxia (FA). A third award will be funded by FARA for $120,000, made possible by sponsorship from Outback Steakhouse. One award is being made to Dr. Mark Payne of Indiana University School of Medicine, proposal titled “Optimizing delivery of frataxin using cell penetrant peptides”. The second award goes to Dr. Gino Cortopassi of the University of California Davis, proposal titled “Screening for mitofunctional Friedreich's Ataxia therapeutics”. The third will be granted to Dr. Marek Napierala from the University of Texas, MD Anderson Cancer Center, proposal titled “Crosstalk between microRNAs and iron metabolism in pathogenesis of Friedreich’s ataxia”. -->Read the entire press release.

Toastmasters

2009-10-12T22:44:00.000-07:00

I started at my Toastmasters club about a year ago and it has been a huge boost in my confidence and public speaking skill level. I go once a week and I now serve as president of my club. I recommend it to anyone who is looking to improve their public speaking skills or to anyone who just wants to have a good time every week. If you are in Sacramento, come check out my club, Klassy Talkers, or find a club near you. Here is part of a speech that I developed at Klassy Talkers:

Packing

2009-10-11T19:37:00.000-07:00

The Philly ride is right around the corner, I am going to fly out there a week from Monday and spend the week in Philadelphia and then the ride is on the 25th. One of my projects for the upcoming week is to figure out how to pack up my trike so I can take it with me. I went by Bicycle Chef today and they gave me a couple of boxes that I am going to use to make one larger box that will safely carry my trike.
I have to figure out how to get this trike into these boxes:

Wish me luck, I'll let you know how it goes.

The Hindsight Years

2009-10-09T21:56:00.000-07:00

The Hindsight Years is a video series that brings light to positive stories of people with Ataxia. This production was created by Canadian film maker Glenn Ter Borg.

This is part two of the six part series:

Production

2009-10-08T15:41:00.000-07:00

I am hanging out with My friend Matt Pegler and we are working on a new video to promote the CHOP Friedreich's Ataxia Symposium that will take place November 14, 2009. We were going to try to have it done by the end of the day but that's in 3 minutes...we may give it a rest after 14 hours in here. We're always so optimistic, but it always takes a lot longer than expected.

Speech to Speech

2009-10-07T21:34:00.000-07:00

Today I represented FARA to the California Community Colleges as they kicked off their Employee Charitable Giving Campaign. I was offered this opportunity by a close family friend, Michelle Ellis. Thanks Michelle!

I gave my presentation and heard from 3 other non-profits who were invited to speak at the meeting. One of the other speakers was Dr. Bob Segalman who is the founder of a service called Speech-to-Speech (STS). STS provides communication assistants (CA's) for people with difficulty being understood by the public on the telephone. Speech-to-Speech is of relevance to the FA community because many FA patients have difficulty communicating on the telephone due to our progressive speech disability. STS is available for business, medical, and personal communication. STS is available in all 50 states, plus the Virgin Islands, Puerto Rico, Australia, New Zealand Sweden. STS is easy to use and available from every phone and does not require registering to use. Just pick up the phone and dial 711 and request a Speech-to-Speech Operator. Your family, friends and business acquaintances can call you and use the STS services just as easily.

I was totally unaware of this service before today and it is a free service that anyone can use anytime we pick up the phone. Dr. Bob said it is Sacramento's best kept secret aside from the amount of money the legislators receive from lobbyists. Here's how it works:
Call 711 and ask for Speech-to-Speech or in California dial 1-800-854-7784. You will reach a communications assistant who has specialized training in listening and is able to understand speakers who have problems speaking loudly or clearly. The trained communication assistant repeats the exact conversation you request to the person you are calling. All conversations are private and confidential, there is no censorship. Callers can use this service as often as they want - 24 hours a day, 7 days a week - conversations have no time limit. Find out more about STS at speechtospeech.org.

After we all gave our presentations, Michelle invited me to lunch with her and Dr. Bob. I found out that there is a lot more to Dr. Bob than just being the founder of a national phone service for disabled people. Dr. Bob is the only person with Cerebral Palsy to hold two PHDs and he wrote a book about his life with a disability. We had a great time at lunch and I am going to start reading Dr Bob's book tonight! Find out more about Dr. Bob Segalman at drbobsautobiography.com.

Me, Dr. Bob, LaCandice (Dr. Bob's CA), Michelle

Brianne's Story

2009-10-06T21:59:00.000-07:00

“…the world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.”

My outlook on life has changed quite drastically because of Friedreich’s Ataxia. I live life for today; for this very moment. Not for yesterday, that’s done. Not for tomorrow either, that’s not looking too bright. I make an effort to get the most out of each moment.
Let’s backtrack a bit… my kindergarten teacher noticed that I was “different” than the other kids. Different being that I sat down a lot instead of doing the standard kindergarten thing; I didn’t play to exhaustion like all the other kids. I went through elementary school with everyone thinking I had a balance problem, because that is what I understood, and told them. The doctors had no idea why. I was finally diagnosed at about 10, after years of seemingly pointless testing. Now I am in my thirties, and I’m happy to say that I live on my own, I have my own apartment and my own car, just like everyone else. I have also experienced various sports, extreme sports you could say.
I continue to struggle against my FA, and enjoy doing it. Why should I sit back and make it easy for FA to run its course? I take an adaptive PE class twice a week, do hippotherapy (horseback riding) every other week, go swimming once a week (when it’s warm enough) and go to the gym whenever I can. This is my weekly routine.
On the more extreme side of things, I snow ski each winter, I go camping, rafting, and skydiving numerous times in the summer. I’ve been parasailing, and I am going to try paragliding.
I may be stuck in a powerchair, I may require a lift to get around my apartment, I may need a speech amplifier and hearing aids, but the world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.

2009-10-05T22:38:00.000-07:00

Today is my Birthday (actually it ended about 20 minutes ago). I realize it will not be my birthday by the time you read this but on this occasion I feel like it is appropriate to draw attention to my fundraising page for Ride Ataxia Philadelphia. Here you can make a donation, view my progress toward my fundraising goal and view the overall progress toward the entire event goal. We are off to a strong start but we need your help to get us there. Thank you for your support!

Recovery

2009-10-04T11:05:00.000-07:00

Just got back from a ride and I have a million things to do today (don't we all).

Often times when I finish a ride I shower, get dressed, then I'm off doing my million other things. Then a couple hours later I crash (just completely run out of energy). This is because I overlook the recovery part of my workout. I often don't eat enough after a ride to allow my body to recover. Three years into my cycling experience I am finally realizing that I need to slow down and be mindful of the recovery process after my rides.

So this morning I ate right when I got off the trike, I iced my knee, took a rest for a bit, took a shower, got dressed and now I'm off to do a million other things...

Every Day in October

2009-10-03T18:37:00.000-07:00

If you haven't noticed, I have been posting every day for the past few days. There is a lot of exciting stuff to communicate lately and I would like to let you know about all of it. For that reason I am going to try to post a blog at least every day for the month of October. I have never tried this before and it is already proving to be a challenging task. However I am going to give it my best. You might get some posts at 1159pm because I had already gone to bed and remembered just before I fell asleep. Also I am going to be traveling to the Philly Ride which will make things challenging but lets see what happens. I hope to see you here every day!

If this post did not satisfy your appetite for entertainment, please check out this post from a couple years ago, its one of my favorites.

Friendly Reminder

2009-10-02T15:16:00.000-07:00

About FARA:
Friedreich's Ataxia is a genetic, progressive neuromuscular condition that affects all muscle coordination from the toes to the fingertips. FA has side effects such as scoliosis, diabetes and serious heart complications. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s. The Friedreich's Ataxia Research Alliance (FARA) is supporting promising research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms. http://curefa.org.

About Ride Ataxia:
Kyle Bryant founded Ride Ataxia in 2007 with a 2,500 mile ride from San Diego, CA to Memphis, TN. Since then Ride Ataxia has become a national powerhouse travelling 3,300 miles in the past three years, raising invaluable ataxia awareness and bringing together $700,000 in research funds. With Kyle Bryant as the Program Director, Ride Ataxia now operates as a FARA program and in 2010 Ride Ataxia will feature challenging and family friendly rides in Sacramento, CA, San Diego, CA and Philadelphia, PA. The event will expand to Dallas, Tampa, Atlanta, Boston, Chicago, St. Louis, Seattle and beyond in the near future.

The mission of Ride Ataxia is to Educate the public about ataxia by drawing attention through acts of physical endurance, Enable the advancement of ataxia research through collaborative financial support and Empower Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength. http://rideataxia.org.

Ride Philly Registration

2009-10-01T09:06:00.000-07:00

The registration for the Philly Ride is going very well! We already have 125 participants signed up with room for many, many more. So please click the link above or visit this website: rideataxia.org/philly to register online.

For those of you coming from out of town (like me), we have reserved a block of rooms at a pretty good rate in a couple different hotels (click here for hotel information). The room blocks are almost full so call soon!

Registration for the Philly Ride ends October 18 so sign up now and start raising funds! We have reached 20% of our fundraising goal with only a few weeks remaining! I am confident that we will reach our goal! Check our progress or make a donation at the FUNDRAISING PAGE.

PS - Check out this press release about the ride.

Full Speed Ahead!

2009-09-30T08:55:00.000-07:00

I am excited to announce that I recently became a full time employee of the Friedreich's Ataxia Research Alliance (FARA). The main purpose of my job is to expand Ride Ataxia with the thought that it might become a revenue stream for the organization with rides all over the country. I could not be more excited about this opportunity to continue pushing the limits and seek my passion full time!

My first week at work was a benchmark week for me. I spent the week in Tampa with Juliann Green (FARA development officer) and Jennifer Farmer (FARA executive director) and we had a crazy week full of presentations and meetings capped off by the taping of a television show (NBC Daytime) which aired in 99 different markets all across the country!

I can't wait to see what the future holds for me personally as we work together to raise awareness and research funds for this important cause. The cure is out there...

USF Symposium

2009-09-02T10:52:00.000-07:00

Hi Folks,

I realize its been a while. Check out this article about the FARA - USF symposium last week: http://hscweb3.hsc.usf.edu/health/now/?p=7640

Time Trial

2009-08-14T18:01:00.000-07:00

Teammate Intro: DIEGO

2009-08-08T16:34:00.001-07:00

Trike Commute!

2009-07-28T21:36:00.000-07:00

Little Man, Huge Heart

2009-07-23T20:23:00.000-07:00

So I came home from the FARA Therapeutics Symposium last Sunday jet lagged, exhausted and more motivated than ever. Spending a few days with the world's leading scientists who are using the money that we raise to find a cure for the disease that alters our lives could not have been more rewarding.
Dr. Mark Pook and Dr. Jim Rusche; both are past recipients of funds raised by Ride Ataxia

When I got home, I was going through my mail and I came across an envelope with second grade handwriting on it. I opened it up and this is what I found:

Enclosed was Jacob's cash donation. Wow, that's pretty powerful. I spoke at Pleasant Ridge School (my alma mater) a couple times and this little guy remembered very clearly, he even spelled Ataxia correctly! Thanks Jacob, you provided another boost at the end of an exciting week!

Presentation

2009-07-16T20:15:00.000-07:00

Here is a short clip of my presentation at the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. I'll get better at the videography, I promise...

Visualization

2009-07-15T18:13:00.000-07:00

I am speaking in the morning. I get pretty amped up when I am preparing for a speech. I plan out what I am going to say in my mind and then I imagine myself delivering the message and I imagine the audience reaction, I kinda go through the whole thing before hand so when I get in front of the audience I have already given this speech to this audience in this very situation. I guess you might call it visualization...

So I decided to prepare during a workout on the stationary recumbent bike in the fitness center here at the hotel tonight. My target heart rate zone for tonight was 135-140 bpm. So I started pedaling and I reached 135 comfortably and I was holding pretty strong. So I took my eyes off the heart rate monitor and started thinking about what I am going to say in the morning. I imagined introducing myself, thanking the researchers for all their work, telling them that we are rooting for them, telling my story from diagnosis to triumph and research funds... I finally looked down at my heart rate monitor and It said 155 bpm, I overshot my target a bit. Wow I got pretty amped while imagining myself in front of the crowd. I might even work speeches into my regular workout routine, perhaps I will wear my heart rate monitor in the morning and it can serve as a workout...

Scientists

2009-07-14T18:51:00.000-07:00

I am spending the week in Philadelphia at a meeting of the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. Its pretty nuts hanging out with a bunch of researchers and scientists. Something truly amazing happens when you get all this brain power in the same place and concentrate it on a common goal, its like a little kid burning ants with a microscope...kinda. For example, tonight I was sitting at the dinner table with a bunch of researchers that represent different research and scientific entities around the world and they were talking about phenotypes and enzymes and mitochondria and I got lost very quickly. However, it seems they could go on for hours about this stuff. They get it and they are sharing it with each other here this week. All these ideas from all over the globe are coming together in the same place to share and learn in the quest for a cure.

A great thing for me is to realize that we (the lay people, the passionate fundraisers, the Ataxia community) are a huge part of the process, we are part of the energy that gets concentrated to create the heat that burns the ants...is this metaphor working? An illustration of this point: at dinner I was sitting next to Dr. Miriam Rai, who works in a lab in Brussels, Belgium under the direction of Dr. Massimo Pandolfo. Miriam was telling me about some compounds that she is studying. She gets these compounds (HDAC inhibitors) from Repligen corporation who is operating with money that they received from the grants that were funded through Ride Ataxia II. It was truly rewarding to see that our efforts are being put into action in the laboratory. Team Ride Ataxia and all the grassroots fundraising efforts are what is driving the research! We are a huge part of the solution!

Ride Ataxia Philly

2009-07-13T16:34:00.000-07:00

Hey folks. I am super excited to announce the next event on the Ride Ataxia Calendar. Ride Ataxia has been working closely with Outback Steakhouse and FARA to put together a one day ride in Philadelphia in October. This will be the first Ride Ataxia event on the east coast! We hope that a smaller event like this will allow for more participation from those who could not commit a week or 10 of time to our previous events. This event is going to be a lot of fun with different lengths of rides to span the spectrum of abilities, great food from Outback Steakhouse, Bonefish Grill, and Carabba's Italian Grill, and fall festivities for all ages.

We will have online registration and more info available soon. For now, mark your callendar for October 25, 2009 for Ride Ataxia Philly! For more information please visit http://rideataxia.org/philly.

Training Program

2009-06-17T20:33:00.000-07:00

So I am starting a new training program on Monday and tonight I went in to visit my trainer, Dirk, for a baseline Anaerobic Threshold test. This test tells us what kind of shape I am in so we can design a training program to fit my needs. Specifically this test tells us my heart rate and pedaling efficiency at different stages of exertion. Now we can design my training program to target certain heart rate zones to work in.

So we set my new trike up on a stationary trainer. This trainer was hooked up to a computer and told us my power output in watts. We also hooked up a little magnet on my crank that told us how fast I am turning the crank. The combination of these two mechanisms told us my pedaling efficiency and the distribution of power between my two legs. The last component was the heart rate monitor that was hooked up to my chest. This allowed us to set the five heart rate zones for an optimized training plan.

So all of this stuff is hooked up to me and my bike and all the data is being displayed on the screen in front of me. Also on this screen are two cyclists. One represents me and one represents the guy I am trying to keep up with. During the test, this other guy kept getting faster and faster and the resistance against my pedaling kept increasing. All the while Dirk is asking me to tell him how hard I am working on a scale of 1-20...In the end the other guy took off and I was left in the dust at a 19 effort level...I have lots of work to do.

During the first stage of the training I will work on building a strong BASE (leg and core muscles) which will allow me to train more aggressively without threat of injury. So we went over some strength building exercises to be done with the aid of an exercise ball.

The threshold test felt like a Gatorade commercial which was pretty cool and I am stoked to have some direction in my training and to be able to measure the results. Now I just gotta make it happen!

New Trike!

2009-06-06T17:06:00.000-07:00

I got a new trike in April and it is going to allow me to go farther and faster than ever before! The purchase of this trike was made possible by the Challenged Athletes Foundation. For those fellow disabled athletes out there please check out the CAF website for information about how you could receive funding for sporting equipment, entrance fees and travel for competition, and training.

Also, my friend Dynah was funded by CAF this year too, check her new trike out here.

Research!

2009-06-01T07:44:00.000-07:00

2009 Kyle Bryant Translational Research Award sponsored by Ride Ataxia, the Friedreich's Ataxia Research Alliance and the National Ataxia Foundation

June 1, 2009 — The Friedreich's Ataxia Research Alliance (FARA) and the National Ataxia Foundation (NAF) invite proposals, under a competitive Request for Applications (RFA) process, to award grants focusing on pre-clinical and clinical investigations that will advance treatments for Friedreich's Ataxia.

FARA and NAF are grateful to the Ride Ataxia cyclists and supporters as well as sponsor Outback Steakhouse who collectively raised $260,000. FARA and NAF will provide matching funds to bring the grant award total to $360,000. As a result a total of three awards will be funded under this program, each limited to $120,000 (direct costs only). Two awards will be funded by FARA and NAF, and the third award will be funded by FARA made possible by the sponsorship from Outback Steakhouse.

Proposals should be for pre-clinical / translational or clinical research focused on Friedreich's ataxia with aims such as identification of biomarkers for FA, development of animal or cellular models to evaluate candidate therapies, development of tools or technologies for therapy development, pre-clinical development and testing of potential targets, or clinical studies of patient outcome measures.

A full list of proposal guidelines and the application can be accessed at http://www.curefa.org/grant.html. Applicants must complete the Kyle Bryant Translational Research Award application form.

Applications will be accepted from for-profit organizations, non-profit organizations, public or private institutions, and foreign institutions. By July 15, 2009, a letter of intent should be submitted with the title and a few sentences describing the focus of the proposal. The application / proposal is due on July 31, 2009.

Letters of intent and applications are to be submitted electronically to jen.farmer@cureFA.org and susan@ataxia.org.

About FARA
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. http://www.curefa.org

About NAF
NAF is a membership supported, nonprofit organization established in 1957 to help persons with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families. http://www.ataxia.org

Contact
Jennifer Farmer
Executive Director, Friedreich's Ataxia Research Alliance
(484) 875-3015
info@curefa.org

Michael Parent
Executive Director, National Ataxia Foundation
(763) 553-0020
mike@ataxia.org

Kyle Bryant
Founder, Ride Ataxia
(916) 203-3238
kyle@rideataxia.org

This announcement can also be found on the FARA website here.

2009 AAI

2009-05-24T16:18:00.000-07:00

The Ataxian Athlete Initiative (AAI) is a program aimed to introduce cycling to Ataxians by funding the purchase of a new trike. This year Ride Ataxia received 6 applications from aspiring Ataxian athletes. Unfortunately our resources limited us to a choice of only one recipient. Our panel found the choice very difficult but in the end we were confident that our selection, Nadia Robertson, fulfills the spirit of the AAI with the willingness to stay active and encourage fellow Ataxians to do the same.

"I don't plan to stop exercising until it becomes physically impossible, which I hope is never...I am already a wheelchair user so hopefully I can inspire Ataxians who are on my same level to stay as active as possible."

Nadia Received her trike in early April and has logged quite a few miles since. She has been reaching out to fellow Ataxian Athletes for advice; keeping us in the loop the whole time:

"My ankles had been rolling in my cycling shoes so I bought some tie-up ankle braces today. I talked to Chris Meyer, a fellow FAer who has a trike, and I guess we're closer progression-wise, so he gave me some adaption tips."

With the help of the 2009 AAI we are positive that Nadia is improving her health and confidence.

The future of the Ataxian Athlete Initiative is very bright. We hope to expand the effort with more funding. This will allow us to fund more athletes encouraging our community of Ataxians to stay active!

Dr. Perlman

2009-05-22T08:43:00.000-07:00

“For 20 years all I could do was tell my patients there were no cures, try to treat their symptoms, and fi ll out their disability forms,” she says. “With the development of molecular genetic technologies and the ability to identify responsible genes and understand their proteins, in the last decade we have begun to design treatments aimed at the disease itself. I am very optimistic about what lies ahead.”

Read more here (page 4): Partners in Discovery

Evan's Walk

2009-05-18T15:39:00.000-07:00

This weekend I went to a fundraiser in Cincinnati Ohio in celebration of Friedreich's Ataxia Awareness Day. The fundraiser was a 3K walk/run organized by the Luebbe family. Evan Luebbe was diagnosed with FA when he was 8 years old. He is now 12 and has a much older personality. I hung out with Evan and his family this weekend and had a blast.

The event went off without a hitch because of huge support from community volunteers. This was the 5th year of this event and it showed as everything fell into place. Everyone had a great time with carnival games including a dunk tank (in which they could soak their principal), a silent auction, raffle, lunch from Outback Steakhouse, a short presentation about FA, and a magic show!

Initial estimates are that there were more than 200 walkers/runners and the event raised more than $25,000.

Thanks Luebbes, I had a lot of fun. You are truly making a difference!

Back Row: Felicia DeRosa, Greg Luebbe, Tammy Luebbe, Pamela Rasey Front Row: Graham Luebbe, Evan Luebbe, Me

My New Sport

2009-05-07T23:17:00.000-07:00

Its late and I need to get to bed but not before I tell you about my rowing experience.

I became interested in rowing after I heard about these two crazy guys who are going to row across the Atlantic in support of Ataxia UK: http://www.rowingtheatlantic.com/. I love this and I hope they know they've got our support!

I was very intrigued by the proposed journey for Ataxia and as I searched around I found many other people who had made the journey. I spent many hours reading about different journeys across the Atlantic and watching YouTube videos about it. One person I ran across was Roz Savage who gave up her desk job to train and row across the Atlantic. Roz is currently in Hawaii after rowing her first leg of the Pacific from California. The second leg of her Pacific row starts in 16 days.

So there are lots of inspiring stories about rowing and I got interested a while ago but just this week I had the opportunity to try it for myself through a class at the Sac State Aquatic Center. The class was 4 days, 2 hours each night.

Monday night we watched a safety video and then took a boat down to the dock to just sit in it and see what it feels like. I sat in the boat and immediately felt like I was going to tip into the water! I was thinking 'There's no way I can do this. Ataxia is going to make me unbalanced and send me into the water as soon as I get away from the dock.' But our instructor, Rudy talked me through how to stay balanced using the oars as leverage on the water. I was still a bit skeptical but I came back the next night.

Tuesday night we each got a boat and we ventured away from the dock to try some things on our own. I was still quite shaky but when I slowed way down, relaxed and thought about what I was doing it went ok until I lost focus (which was quite often). When I was really struggling Rudy walked me through the things I needed to do and it all came together. Much improvement and some fun.

Wednesday night we spent an hour and a half in our boats and I improved a lot but I also struggled quite a bit. It was a little windy that night and I had to keep correcting my course quite often which meant turning the boat sometimes 180 degrees. This proved to be a challenge as I struggled to figure out the right blade position for my oars. At the end of the night I was exhausted but I could not wait to try it again. It seemed like my skills improved each night as I struggled through the rough stuff and enjoyed the good strokes.

Tonight we ventured even farther into the lake. The wind was blowing pretty hard when we showed up and we almost called it off but the wind died down to a reasonable breeze and we gave it a try. I felt so much more comfortable and confident tonight and these feelings translated into some decent rowing strokes. I had a lot of fun tonight and was much less exhausted because I was actually rowing instead of flailing around.

At the beginning of the week I was pretty freaked out and unstable. I was ready to call it a loss on account of ataxia. However I stuck with it and found that it's just a matter of getting out there and seeing what happens. I look forward to more rowing as I try to incorporate it into my fitness routine.

Training For Next Year

2009-04-27T22:41:00.000-07:00

After Ride Ataxia 3 (about a month and a half ago) I was sick for 2 weeks straight. At a couple points during that time, I thought it was never going to end. However after two weeks of couch time and some thrilling surfing on my way too basic cable I finally pulled out of it and now I am back to feeling 100%.

During the two ill weeks I did absolutely zero physical activity and my muscles tightened up big time. The muscles holding my knees together were so tight that it was painful to ride. I was a little concerned so I paid a visit to Dirk, my Physical Therapist, who told me that there is no reason to be alarmed, I just needed to get loosened up. So I massaged and stretched the heck out of my legs for two weeks in preparation for the Chico Wildflower ride. The ride was yesterday and there was a strong presence from the Ride Ataxia Cycling Team.
Left to Right: ED, Chris, Becky, Karen, Stephanie, Diane, Mike, Me, John. Not Pictured: Tess, Mark

There were many options for the ride. A century (100 miles), 65 miler, flat 60 miler, flat 30 miler. John was the only brave soul to complete the century (his first century), congratulations John! A few of our group modified the century route to complete about 85 miles, some of us did the flat 60 miler which turned into about 75 after we got lost, hooray! And a couple in our group completed the 30 miler, congratulations ladies!

The weather was fantastic and we all had a great time. We enjoyed a large meal and massages at the end.

Today I was very tight but it could have been much worse. I am headed back to see Dirk to make sure I continue to stay loose!

Reflection

2009-03-29T14:26:00.000-07:00

We left Seattle about a week ago and after surviving a terrible fever I have had time to reflect on our Journey. I spoke with a few teammates and the general feeling is that the time spent on the bike was wet, cold and extremely difficult. However everyone came away with a positive experience. Each person challenged him/herself every day and in the end we came together as a team to encourage each other to the finish each day.
I think everyone agrees that this is not something that any of us would have done if we did not have a reason to ride out on a limb for a deserving cause. In fact, at times the travel was quite treacherous:
But despite the horrendous riding conditions we managed to have fun:
And we kept moving toward our goal with purpose. Our purpose was to improve ourselves personally in hopes that we would benefit others at the same time. I am confident that we accomplished these goals as I hear positive feedback from teammates and as I see the research dollars continuing to trickle in. We have already doubled our fundraising goal and the total keeps rising as we passed $220,000.

There were a number of defining moments during this ride, but a particularly significant one came 2 miles before the end on a 21% grade incline. Without a feasible alternate route, cyclists were left with no other choice but to climb this wall of a hill. In a striking parallel to facing the challenges of life with FA, the nearly 70 cyclists dug in and approached the uphill battle with determination and perseverance. Many of the recumbent trikes were unable to gain traction on such a steep incline; so their teammates abandoned their bikes and helped push them up. Other teammates picked up the abandoned bikes and cyclists reported that very few words were exchanged- just recognition of need followed by action.

Morning Show

2009-03-22T20:26:00.000-07:00

Hi.

The NAF conference was fantastic as usual and we are headed home now. I will have some thoughts and reflections soon but in the mean time, I will be on a morning show in Portland in the morning. Not sure if you can watch live on the web but check it out: AM North West

Victory!

2009-03-19T18:23:00.000-07:00

We rolled in to the hotel this afternoon as a huge group. We were welcomed by a crowd of smiling faces. Ron Bartek, President of FARA said a few words and then Mike Parent, Executive Director of NAF said a few words and then we honored each rider with a medal to remember the ride. Unfortunately I do not have any pictures at this point but I hope to post some tomorrow.

I am extremely proud of our team and the personal accomplishments of each person. Additionally we have passed $220,000 in fundraising!

Stay tuned, more to come...

Triumph

2009-03-18T22:32:00.000-07:00

Today started slowly and painfully for many of us. Personally, during the first half mile of the day, I was unsure that I was going to be able to last all day because of the pain in my knees. However, we pushed through the pain and loosened up. The weather was relatively nice today and we had a slight tailwind to help us along.

We rode for about 20 miles through a town and down some country roads. Then we hit a bike trail and we were cruising. The tail wind and the smooth surface helped us reach high speeds with little effort. We rode this trail all the way to lunch at mile 28.
TEAM!

LUNCH

MOM AND DAD, the two that make it all work.

We stopped for a quick bite and were off again. Shortly after lunch the trail ended and we missed a turn...we got lost for about a half hour. When we finally found our way back, we were cruising again at high speeds.

The day dragged on toward the end and the knees began to stiffen and the pain returned but we struggled through to the end.

I am so proud to have finished the ride today because I really did not think it was possible when I began.

We had one last team dinner at an Outback Steakhouse restaurant. The food was fabulous and we shared a few stories from the road, people talked about their favorite parts of the ride and we had a lot of fun remembering what happened over the past few days.

Tomorrow is the final day of Ride Ataxia 3. We only have about 30 miles and we are due to arrive at the National Ataxia Foundation Conference at 2pm. It will be a day of triumph!

COLD!

2009-03-17T16:16:00.000-07:00

We left this morning from our hotel at about 9am in a downpour.

Today was a short day (40 miles) but the weather made it seem like much more. We can all deal with the wetness at this point but today was particularly cold... Most of us went for several hours without feeling in our toes. The only way to warm up was to ride as hard as we could to get the heart pumping and the circulation going to the extremities.

After our lunch stop quite a few groups of us rode past a loose dog who was not friendly. Several people were chased at high speeds. One story was that the dog could run at 19 miles an hour while barking, growling and snarling. Luckily nobody got hurt and the dog had fun today with lots of people to chase.

Here we are at the world's largest egg:

When we finally reached our destination, we thawed our fingers and toes and headed to dinner at the historic train depot in, Centralia Washington. We were honored to have the mayor of Centralia along with the operator of the train depot, Pollo Enriquez with us at dinner. The city generously provided the space to us free of charge.

Our dinner was once again catered by Outback Steakhouse and their volunteer crew. The food was fantastic (ribs that fell off the bone smothered in BBQ sauce...garlic mashed potatoes, wild rice and cinnamon apples for dessert). Outback has been a HUGE supporter of the ride this year. They are an organization dedicated to service and community. Thank you Outback.

This day was brought to you in part by the OB Beer Club. Happy Saint Patrick's Day!

Big day tomorrow. 62 miles, bring on the rain!

Weather and Bridges

2009-03-16T21:44:00.001-07:00

Craziest day ever! But let me start from the beginning.

This morning we had a nice send off ceremony at OHSU. Three Doctors/Researchers told us a little about what they do for Ataxia. We heard from Dr. Maylie and Dr. Nutt both from OHSU and we heard from Dr. Scutt who is the Medical director for the National Ataxia Foundation. All three gentlemen gave very nice talks about what they do and all three stressed how important it is to have funds from groups like ours to help get research off the ground.

Gathered outside the building, here is the whole team:

We then took off through downtown Portland and once again it became apparent how many people we had on this trip. It was pretty fun to travel through downtown turning heads as a huge, strong team.

When we got out of town, we hit the highway and it immediately started pouring rain. It started getting a bit miserable but as soon as my clothes soaked through, my body heat warmed the water that was next to my skin and I started warming up. We had heavy rain, light rain, sunshine and rolling hills until lunch. Lunch was pretty sunny and we had some fun:

After lunch we ran into more ridiculous weather...much more rain...and hail for about 5 minutes. We crossed some railroad tracks and 3 of our teammates fell pretty hard at the tracks, one requiring minor medical attention but our SAG team took care of business and everything is fine.

At mile 51 we crossed the Louis and Clark Bridge form Oregon to the state of Washington...Everyone had been talking about this bridge and how scary it would be...the bridge lived up to the hype. The Bridge was about 2 miles long and it had a small bike lane on the shoulder. It was pretty darn steep on either side so it was a slow climb followed by a screaming down hill. We crossed the bridge in a group of four: Me, Mike Bryant, Uncle Steve and Sean Roberson. When we reached the halfway point of the bridge (the highest spot) the rain began to turn very heavy and was between rain and snow, the wind was blowing very hard and the bridge began to sway a bit. The trucks to our left were causing the guard rail to rattle as if it were going to fall off. Then we began our descent. We landed on solid ground as soon as possible and as soon as we got off the bridge, the sun came out...Mother Nature was playing tricks on us.

We are all safe and sound in our hotel in Kelso. I believe we got the GPS working so you can track our progress daily from the link directly above this post. WE're on our way. One down three to go!

Check out the local news coverage from News 10!

SHOUT OUT:
This one goes out to our friends in Martinez, CA. Angela and Ricky are kicking butt. Thanks for the support! See you soon!

'Twas The Night Before

2009-03-15T21:50:00.000-07:00

We are taking off in the morning! 70 participants! We are a mighty force in the fight to cure FA!

FUNDRAISING UPDATE: $175,000! We're not done yet!

Today we had a team meal at Outback Steakhouse. We met all the new teammates and had a great meal. Thank you to Outback for providing the meal and the outstanding service!

Tonight we held "pre-registration" in my hotel room and it became aparent how many people we have riding with us:

ULTIMATE DEDICATION:
This morning one of our teammates, Tess, called a friend to pick her up to drive to the airport so she could fly here to Portland. The friend, Angela showed up at Tess's house at 6am. They loaded all Tess' stuff in the car, started the car to warm it up and walked back to the house to grab something...As they were walking back to the house, literally 20 feet away from the car, someone jumped in the car and got on the freeway never to be seen again! CAR...GONE. ALL TESS' GEAR...GONE. Yes, this really happened this morning. So what did Tess do in the face of losing all her stuff (her bike was not in the car)? First of all, she let Angela borrow her vehicle to make it through the weekend. Then she went to the bike shop and bought all new gear. She changed her flight to a later time and now she is here with us as part of the team!

Tess has set the tone of dedication for the team this week. We will keep this in mind as we take off in the morning in the cold and rain...

On The Road

2009-03-14T09:16:00.000-07:00

I am posting this from the passenger seat of the truck using our trusty Verizon Wireless internet card. We just passed Mt Shasta, a volcano in Northern California.

Left home last night. Headed for Portland, Oregon. It feels like old times, just Me, Mom and Dad in the truck pulling the trailer. We left from the Sacramento area at about 3pm yesterday and drove for three hours to Redding, CA where we stayed for the night. It was just the three of us in a hotel room, it felt like the first ride...restless sleep thinking about what is ahead.

I am finally getting excited for the ride. I have been super anxious until this point. Months of preparation, endless strings of emails and countless details are taken care of and now its go time...bring it on!

We will stay in Portland tonight and tomorrow we will have lunch with the entire team at Outback Steakhouse. There are many team members who I have not met and only know by their registration form and the large amount of money each of them have raised for this cause. The lunch will be a great chance to get acquainted before we hit the road the next day.

The weather looks like it could be a factor but it will only make it more of an accomplishment when we finish!

Stay tuned, I plan to post once a day for the next week, this is going to be a great ride!

Track Us LIVE!

2009-03-11T16:35:00.000-07:00

Check this out! A friend hooked me up with Mats Janssen from TrackMe360.com. Mats set up a map where anyone can log on to check out where we are during the upcoming ride. Check out the TrackMe360.com Ride Ataxia Adventure Zone. The map will go live during the ride March 16 - March 19, 2009. Less than a week away!

Educate and Enable

2009-03-04T17:30:00.000-08:00

The past couple of weeks have been a whirlwind of action for Ride Ataxia.

First of all, we had our second annual fundraiser in Truckee at Uncle Neal's Cabin. That weekend I went skiing for the second time this year and I had a blast again! This time I tried a bi-ski. My decision to try the bi-ski was a simple one to make for a couple of reasons:

1. Because of the balance issues associated with FA, I felt I would quickly approach a plateau in my skiing ability if I continued to ski standing up.

2. On my way to that plateau I was more prone to injury if I continued to stand. This is a risk I am not willing to take since Ride Ataxia 3 is quickly approaching.

So I tried the bi-ski. I had a lot of fun, those things carve like butter and they hold an edge like an Olympian. However, it was a lot more difficult than I expected. I saw people SHREDDING in the bi-ski and thought that it looked easy and I would be a pro in no time...not so. I took some spills but I had a few good turns too. In the end, I had a great time and I discovered another ability. I will be back!

That night we had our second annual Truckee Fundraiser. Libby and Neal Lacativo held a fundraiser in their cabin. There were more than 60 people in attendance and there was a lot of great stuff including lift tickets, ski lessons, fishing trips, a weekend in Mexico, an Ipod and the list goes on and on...

The set up was intense and took all day. Angela preparing a gift basketRicky on the 'QAllison preparing the soup

It all came together with friends, family and fundraising. Thanks to my dedicated family/team members we raised $5,385 that night. These funds will go straight to the hands of researchers who are on their way to finding a cure for FA.

The best part of the night came when we were collecting donations at the end. One of the guests, Gary, offered to donate an additional $500 if Uncle Neal would go skydiving with me. In the name of research, Uncle Neal agreed and we are going to do it this summer, maybe we'll make it into a skydive-a-thon! Let me know if you're interested...

Thanks to the Lacativo Greene team who are in the lead for total dollars raised on the Ride Ataxia Team Fundraising Page

The Lacativo-Greene team includes:

Neal Lacativo
Libby Lacativo
Kacey Lacativo
Ricky Greene
Angela Greene
Allison Muller

Special thanks to Libby for countless hours spent to make this event truly great. You are making a difference!

Train in the Rain

2009-02-14T22:43:00.000-08:00

We have finally had some wet weather here in California. Some teammates and I thought that it might be a perfect opportunity to try out our wet weather gear in preparation for the upcoming ride in the Pacific Northwest.

On Thursday Susie and I rode to work in a drizzle. I found out that I need better gloves and I need to install the fenders for my front tires. The spray from the front tires goes straight to my hands and my gloves quickly soaked through...We both noticed that our faces tend to get really cold when they are wet. At 7am on a clear day it is cold but we do not notice the chill in our faces. On Thursday morning everything was pretty warm except our wet faces. We might have to think about this a bit before purchasing a full face mask...

This morning we had another team Brown and Caldwell ride. We met at the Guy West Bridge on the bike trail and the wind was blowing pretty good. I thought I was really smart and suggested that we head east into the wind so we would have a tailwind on the way back...We rode ten miles and when we turned around it seemed that the wind had switched directions! So we rode another ten miles into the wind! So much for planning ahead, Mother nature has a mind of her own! In the end we completed 20 miles and even though we dressed for a blizzard we had sun for most of the morning!
Shirley, Lance, Susie, Diane, Diego, Me

After the training ride I met a friend downtown for the Tour of California time trials. It was pretty amazing to see the speeds these guys were reaching in such a short race.

Lance Armstrong was there and I saw him race. However I am embarrassed to say that I did not realize he had gone by until someone told me. How lame is that? I was watching the faces of the riders assuming I would recognize Lance, instead I should have been reading the name of each rider off their trailing motorcycle.

If something is seen but not recognized, did it really even happen?

Skiing!

2009-02-11T17:19:00.000-08:00

This weekend I went skiing with some FA friends.

We stayed in a cabin in Truckee, CA on Friday and Saturday nights and skied in the afternoon on Saturday. At the cabin we spent time laughing at each other, having very serious political discussions about MAC vs. PC, listening to one of Paul's informative and insightful lay person FA lectures, and learning to play Backgammon.

Valorie, Sierra, Me, Sophia, Susan, Paul, Phil, Calie, Brianne, Nate Sean, Claudia, Haley

There were 5 skiers in our group, we skied with Disabled Sports USA and had a blast! I attempted to ski standing up again and I performed quite well if I don't say so myself. However I think I am going to try sit skiing on a monoski or a biski next time so that I can be a little more aggressive and reduce the risk of injury. Also, the sit skis look like a lot more fun as demonstrated by Phil, Brianne, Calie and Sophia. Find out more about disabled ski equipment at the DSUSA equipment resource page.

Me and Brianne

Me and Phil

My instructor for the afternoon was Vanessa who I had met during the summer while cycling and waterskiing with DSUSA. Vanessa and I had a great time shredding the mountain and chatting and laughing on the lift. Skiing is great because: 1. You're skiing 2. You're hanging out with other people who love skiing.

Me and Vanessa

A good time was had by all!

Training

2009-02-01T17:30:00.000-08:00

We have a large team this year (44 riders so far [there's still time, registration closes on Feb 15]) and we are all training harder every day in preparation for our March 16 - 19 adventure.

A month ago, over Christmas break, I visited Chico, CA to spend a few days at my brother's house and we took a training ride with some teammates. Man it was cold! We were all decked out in our cold weather gear and we had a great time. There were 9 of us and we covered about 20 miles.

Left to Right: Chris Prater, Mike Bryant, Me, Jina Bryant, Becky Prater, Collin Bryant, Stephanie Lockwood, John Lockwood, Cody Prater

It was cold in Chico in late December but it has been warm and dry around here lately. Perfect January training weather! Yesterday, some teammates from work got together for a ride. It is tough to get up early on a Saturday morning but we were glad to be on the trail! It was an important ride because we all realized how much work we need to do before March 16.

Lance, Amanda, Me, Diego, Roberto, Susie, Shirley

Ride on!

Ride Ataxia on PBS

2009-01-27T20:41:00.000-08:00

Awareness is key and as go-time (March 16, 2009) draws nearer we are all pushing for more media coverage. Thanks to a good friend, I was introduced to Rob Stewart. Rob and crew is putting together a new series for our Northern California PBS Station (KVIE). The series is called Rob on the Road and features local stories from Nor Cal.

I met with Rob on a cloudy morning on the American River Bike Trail. Teammates Sean Baumstark and John Lockwood accompanied me. We shot a short piece that will air multiple times this week on KVIE. View the story at: http://www.kvie.org/programs/kvie/robontheroad/video.htm

Also Check out Rob's Blog where he gives a little more insight into the story. Read Rob's blog HERE.

Don't Let Cold Weather Slow You Down!

2009-01-17T18:35:00.000-08:00

Winter is cold! The cold makes everything run a bit slower, including muscles needed for coordination. Ice on the ground is the last straw, I want nothing to do with it. However, winter provides the opportunity to participate in some pretty amazing adaptive sports.

My friend Matt just sent me his latest article that he wrote for Sports 'n Spokes magazine. In the article, Matt presents all aspects of adaptive skiing encouraging all disabled athletes to face the cold and have some fun! Download the article HERE.

Here Are Some Highlights:

"My favorite things about skiing can be summed up in two ways. First, freedom from disability. Skiing makes me feel physically strong, powerful, and free from any limitations. Skiing is a true vacation from muscular dystrophy..." - Lisa Kus (Reno, Nev.)

"I don’t have the balance to carve a mono-ski, and I wanted to be able to ski independently with my friends, so the staff at Disabled Sports took this into consideration and taught me to ski using a dual ski,” he says. “Now I live for skiing fast, deep snow and cold face shots of fresh powder. The equipment needs to progress more, especially developing a better suspension system for the dual ski. But in the meantime, I will continue riding hard and pushing the limits of myself and my dual ski." - Brad Carr (Mt. Hood, OR)

“Adaptive crosscountry skiing is a blast; it’s absolutely addicting, and you simply won’t believe how much fun it is until you try it,” says Bob Vogel, a T10 para from Loomis, Calif. “With this very simplepiece of equipment and a desire to get your heart pumping,Mother Nature puts a big white accessible ramp into the great outdoors,” he says.

"This winter when the snow flies, instead of hiding indoors and wasting time on the couch, take a risk, take a chance. Go outside and try something new. An active body leads to a healthy mind, and winter weather should no longer trigger thoughts of cabin fever. It doesn’t matter what your disability is, with the specialized adaptive equipment available today, the beauty, serenity, smells, and excitement of winter can be yours to enjoy. See you outside!" - Matt Strugar-Fritsch

I also want to share a perspective from a fellow Ataxian who continues to push her personal limits. Dynah Haubert writes about her experiences with adaptive skiing in these two blog posts:

I skied, and now I ski

XC excitement

I am planning a couple Ski trips this year, I am pretty stoked to get on the mountain. It promises to be more fun than last year:

In The News

2009-01-11T16:34:00.000-08:00

Along with the press release mentioned below, please check out this article from The Grass Valley Union, Grass Valley California. Read the article HERE.

Announcement!

2009-01-11T12:32:00.000-08:00

Check it out! This press release is posted as a PDF in the link above (or HERE) so feel free to use it to promote the Ride!

NAF, FARA, Ride Ataxia PRESS RELEASE

FOR IMMEDIATE RELEASE

Cyclist with Rare Neuromuscular Disorder to Begin Third Cycling Journey

January 6, 2009 — Kyle Bryant and Team Ride Ataxia are preparing to begin their third cycling journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia (FA) with which Bryant and other teammates are affected.

The team will begin the ride on March 16, 2009 at Oregon Health Sciences University in Portland, Oregon and conclude in Seattle, Washington on March 19, 2009 at the National Ataxia Foundation's 52nd Annual Meeting. It will be a 4-day trip covering 200 miles.

Bryant and Team Ride Ataxia have cycled 3,100 miles cross country in the past two years. In 2007, Bryant and his father, Mike Bryant completed a 2,400 mile bike ride visiting FA researchers and patient families from La Jolla, California to Memphis, Tennessee. In March 2008, the Bryants were joined by many new teammates including 6 ataxians on their bike ride from Sacramento, California to Las Vegas, Nevada.

The funds raised by the team on their cross-country “Ride Ataxia” have gone directly to the annual Kyle Bryant Research Award for translational research in FA. In 2008, the team raised $142,000 and the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance added sufficient funds to bring the award total to $250,000. Ride Ataxia, NAF and FARA co-funded two $125,000 awards in 2008. One award was made to Repligen Corporation, Waltham MA, which in collaboration with an international team of researchers is advancing compounds called HDAC inhibitors that target increased levels of frataxin – the protein that is severely reduced in FA. The second award went to a team of investigators at Ohio State University, Drs. Subha V. Raman and Roula al-Dahhak, who propose a series of sophisticated imaging studies to better understand, prevent and treat heart disease in FA.

NAF Executive Director Michael Parent commented, "NAF is excited to again partner with Kyle Bryant, Team Ride Ataxia and FARA for the third annual cycling journey. NAF applauds Kyle and Team Ride Ataxia for their continued efforts to support vital Friedreich’s ataxia research and enhance ataxia awareness. NAF looks forward to collaborating again this year with FARA to help accelerate important translational research in FA. “

FARA President Ron Bartek added, "Kyle Bryant, his family and his Ride Ataxia teammates are real difference makers. These courageous, resourceful and dedicated people have made their cycles into vehicles of change that have vastly expanded the horizons of awareness regarding Friedreich’s ataxia and have significantly increased financial support for Friedreich’s ataxia research. FARA is deeply grateful to Kyle and Team Ride Ataxia and looks forward to the 2009 Team Ride Ataxia/FARA/NAF collaboration that will once again focus increased awareness and resources on the research that will result in treatments and a cure.“

Team Ride Ataxia has set a goal of raising $100,000 towards research for Friedreich's ataxia in 2009. The team is seeking cyclists to join them on their journey as well as sponsors. For information about participation or to make a donation please visit http://www.rideataxia.org. Participant applications and deposits are due February 15.

Bryant stated, “In 2009 Ride Ataxia looks forward to continued success raising awareness, collaboratively funding research, and empowering ataxians and others to seek their fitness goals and have fun doing it.”

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. Onset of symptoms can vary from childhood to adulthood and can include muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; aggressive scoliosis (curvature of the spine); diabetes, and a serious heart condition. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. There is currently no treatment or cure.

About FARA
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. http://www.curefa.org

About NAF
NAF is a membership supported, nonprofit organization established in 1957 to help persons with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families. http://www.ataxia.org

Contact
Ronald Bartek
President, Friedreich's Ataxia Research Alliance
(703) 426-1576
info@curefa.org

Michael Parent
Executive Director, National Ataxia Foundation
(763) 553-0020
mike@ataxia.org

Kyle Bryant
Founder, Ride Ataxia
(916) 203-3238
kyle@rideataxia.org

Ataxian Athlete Initiative

2008-11-14T22:39:00.000-08:00

Part of the mission of Ride Ataxia is to “EMPOWER Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength.” The Ataxian Athlete Initiative strives to accomplish this mission.

Through the 2009 Ataxian Athlete Initiative, Ride Ataxia will fund the purchase of a Terra Trike Cruiser (http://www.terratrike.com/cruiser.php)to be given to an aspiring Ataxian Athlete so that he or she may start a personal Ride Ataxia Adventure.
TerraTrike Cruiser:

To apply for the Ataxian Athlete Initiative individuals will tell their story by filling out a simple application and writing a summary about their experiences with Ataxia. The application is available to Ataxians worldwide. Individuals must have been diagnosed with some form of ataxia to qualify.

The applications will be reviewed by a panel of Disabled Athletes, Ataxians and others in the ataxia community. The recipient will be notified by March 1, 2009. The recipient will be announced and the trike presented at the National Ataxia Foundation Annual Membership Meeting in Seattle, WA on March 20, 2009.

Download the application here.