Sunday, November 07, 2010

Top Fundraisers

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:
  1. Margaret Ferrarone - Philly 2010 - $23,188
  2. Angela + Ricky Greene - NorCal 2010 - $10,865
  3. Ed + Lisa Ramsey - Tampa Bay 2010 - $6,775
The top fundraising teams are:
  1. Team Helms - NorCal 2010 - $23,229
  2. The Rupeleton - NorCal 2010 - $17,515
  3. Team Sam Bridgeman - NorCal 2010 - $15,591
Get on the list during Ride Ataxia Southern California on December 4-5, 2010:

Thursday, November 04, 2010

Ride Ataxia Southern California - Sunsets and Research

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:

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:

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

Friday, October 15, 2010

Ride Ataxia Philadelphia - A Huge Success!

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 and  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 

        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.

Friday, June 04, 2010

Team FARA on the News!

Meet the team, watch the trailer for our documentary, get updates from the road and watch our progress with a live GPS tracker at

Tuesday, June 01, 2010


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

Watch and learn from this guy...

Thursday, May 20, 2010

NorCal Review

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 or watch the trailer for our documentary at

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!

Monday, May 10, 2010

Radio Promo

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

Saturday, May 08, 2010


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

Tuesday, April 13, 2010

Wednesday, March 31, 2010

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

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.

Monday, March 29, 2010

Amendment to the 2010 Ataxian Athlete Initiative

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.

Wednesday, March 17, 2010

2010 Ataxian Athlete Initiative

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.

Friday, March 05, 2010

NorCal Jersey

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!

Thursday, March 04, 2010

Radio Blog

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

Friday, February 26, 2010

Front Page

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

Friday, February 19, 2010

Ultra FARAthon!

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

Monday, February 15, 2010

Two New Rides!

FARA Presents 
Ride Ataxia Tampa Bay 
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

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

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

Friday, February 12, 2010

Neurology Now!

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:

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!

Thursday, February 04, 2010

The Art of Cycling In The Rain

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."

Saturday, January 23, 2010

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

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.


The FARA Board of Directors & Staff

Friday, January 22, 2010

FA Cardiac Study

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.

Monday, January 18, 2010

Research Study at Dupont Childrens Hospital

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 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!

Sunday, January 10, 2010


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.