Ride Ataxia Exceeds $1 Million In Funded Research

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.

1. 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.
2. 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

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

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

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.

1. Send a text daily to the number "73774" and write "106922" in the body of the message.
2. Cast a vote daily either through your Facebook login or directly through Pepsi refresheverything.com/theataxian
3. 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.

Sign up screen:

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

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

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!

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

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

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!

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

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. 

       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/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

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

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