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This is what it's all about...Results! We are truly making a huge difference here.

The collaboration between Ride Ataxia, NAF, and FARA is amazing. We started working together just over two years ago and we have already funded $350,000 worth of promising Ataxia research!

We funded one research award last year, that one was chosen from ten proposals. We are funding two awards this year chosen from eight proposals. Three awards given among 18 promising applicants! Who even knew there were 18 new ideas for Ataxia research? Researchers all over the world are bringing their ideas to the table for this award. There is some real excitement here and the collaboration of these three organizations is capturing the excitement and producing results!
FARA, NAF, Ride Ataxia Joint Press Release

FOR IMMEDIATE RELEASE

$250,000 in Kyle Bryant Translational Research Awards Announced Today

August 6, 2008 — The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that, this year, they are co-funding two $125,000 Kyle Bryant Awards that are going to promising translational research in Friedreich’s Ataxia (FA). One award is being made to Repligen Corporation, Waltham MA, who 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 goes 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.

Repligen’s research proposes to develop methods to use with the FA mouse models in order to select which HDAC inhibitor will be best to test in FA patients and what doses of that HDAC inhibitor will be most likely to maximize frataxin protein levels while minimizing toxicity. Drs. Subha V. Raman and Roula al-Dahhak, recognizing that heart disease in FA is poorly understood, have focused their research project on testing new ideas regarding how heart disease develops in FA, earlier detection of the heart disease, and development of new prevention and treatment strategies that would reduce heart-related disability and death.

These two research projects were selected from eight excellent applications that were peer-reviewed and then ranked by FARA and NAF scientific advisors. The Kyle Bryant Translational Research Award was established in honor of Kyle Bryant, the courageous young man who has Friedreich's ataxia and formed Ride Ataxia. Ride Ataxia has helped increase awareness regarding FA and raise invaluable research funds for FA research. The Ride allows motivated inpiduals to experience and advance the fight against this debilitating disease. In 2008, Ride Ataxia II began in Sacramento, CA and ended in Las Vegas, NV at the 51st NAF annual membership meeting. Bryant and Ride Ataxia II teams raised over $140,000 to support the award. NAF and FARA announced at the end of the ride that the two organizations would add sufficient funds to bring the total of the 2008 Kyle Bryant Translational Research Award to $250,000.

NAF Executive Director Michael Parent commented, "The National Ataxia Foundation is truly grateful to Kyle Bryant and the other riders and supporters of Ride Ataxia II in making it possible to help fund two $125,000 quality research studies. Their efforts give hope for today and a promise for a brighter future for those affected by ataxia and their families." FARA President Ron Bartek added, "Kyle’s courage, commitment and dedication, reinforced by a growing number of his family members, friends, supporters and others with FA, have again inspired and enabled FARA and NAF to collaborate in co-funding exciting new FA research. With all of us working together like this, we will develop treatments and a cure. This Kyle Bryant-FARA-NAF collaboration is accelerating that accomplishment." Ride Ataxia II, launched in Sacramento, CA on March 15, 2008 with 50 riders, and logged about 60 miles a day, arriving in Las Vegas on March 28, 2008. Bryant kept a blog describing the adventures along the way: http://rideataxia.blogspot.com

"There is an optimism in our community of Ataxians. Many people think that we can actually beat this thing. I am confident that our brilliant doctors and researchers are doing all they can to find a treatment or a cure. Until we find a cure, Ride Ataxia will continue to promote an active and healthy lifestyle for all Ataxians." said Bryant.

Friedreich's ataxia is a rare, life-shortening, debilitating, genetic, neurodegenerative disorder. Onset of symptoms usually occurs between the ages of 5 and 15. Symptoms 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. Most patients need a wheelchair full-time by their late teens and die as young adults. 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
fara@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

 

 

 

Outback Charity Golf Tournament

I had a dream day on Monday. I took a drive down to the Outback Steakhouse Charity Golf Tournament in Pleasanton, CA. The Tournament was a fundraiser for MDA (Muscular Distrophy Association). Friedreich's Ataxia is one of the many diseases under the MDA umbrella. A large portion of the money raised on Monday is going directly to FA research.

Pat Kruk of Outback Steakhouse invited me to attend and I had a blast all day. I arrived at around 10am while the participants were showing up. I chatted with Pat for a while and then the tournament host John Madden showed up, yes the John Madden. I met Coach Madden and Pat told him that I had been riding my bike to raise funds, he said "You are strong." Coach was pulled away for a TV interview but not before I took advantage of the photo op:



Pat got a golf cart for me and I cruised the course with my friend Laurel meeting people and shooting the bull. There was food and drink at every hole so Laurel and I drove around all day eating and drinking Mai Tais, Ribs, Lemonade, Hot Wings, Long Islands, Seared Ahi...




On the course we hung out with Phil Bennet (24, FA) and other celebrities such as Tom Keating former All-Star Oakland Raider


And two-time Pro Bowler and four-time Super Bowl Champion, former San Francisco 49er Eric Wright.


At the end of the day, we had a great dinner Courtesy of Outback Steakhouse and a few words from Coach Madden. One of the goals of the day was to raise money to send kids to MDA Summer Camp. It costs around $500 to send a kid to camp for a week. So a few of the kids got up and told their stories...within about 25 minutes the MDA had collected 65 pledges to send kids to camp, that's over $30,000 in less than half an hour...amazing.

The tournament was a huge success ($150k all together) and we all had a lot of fun. Many thanks to Pat Kruk (Below, Right) and Outback Steakhouse!

 

 

 

 

 

 

 

 

Water Skiing

Yesterday I went waterskiing for the first time in about 8 years. My family owned a boat when I was young and we would go skiing, kneeboarding and wakeboarding weekly during the summer. During highschool a close friend of mine got into wakeboarding and we worked as lifeguards at a lake so we went wakeboarding several times a week.

As FA continued to progress I gave up wakeboarding and boating sports. I remember the last time I went wakeboarding, it was a struggle to get up and then I just wobbled like crazy until I went down with a splash.

On Saturday Disabled Sports USA Far West made it possible to experience boating sports again.

I pulled up to the lake at around 9am. This lake is a tiny little puddle made specifically for competition water skiing. It is only like 10 feet deep at the center, just deep enough for the boat. The lake is located at Pleasant Oak Ranch and the owner generously donates the use of the lake several times a year for DSUSA.

I met my instructors and we did a quick diagnosis to see whether I should try stand up skis or not. They asked me to stand on one foot, I could not, so we busted out the sit-ski. To me this thing looked kinda uncomfortable and lame. I soon found out that is actually quite comfortable and it rips! They fit me to a "cage" (the thing that you sit in) and it fit snug around my hips. The cage is bolted to the ski just like wakeboard bindings.

In the water I had an instructor, Brian, help me into the cage and then he helped me stabilize until the boat took off. I had a tough time starting, it took a couple tries and then I got it. I was up, skipping along at about 17mph. The sit-ski that I had was quite stable and the ride was effortless. It all came back to me, like riding a bike. I carved outside the wake then cut back, slowly at first then I started getting comfortable.

I cut out and back hard this time. I caught air on the wake and came down a little sideways. I swerved a bit then went down face first, water up the nose.

I had not realized how much I missed that terrible burning feeling in my nose...WOOHOO! I got up again and repeated the thrill, this time I cut a little harder and got a little higher, awesome...


I am stoked to discover boating sports again and I will definitely be back for more this summer. I am going to try a different ski, a more high performance ski that will allow me to edge a little more and cut harder...stay tuned!

 

 

 

 

 

The Berserker



Trikes are meant for the open road...or so I thought until a friend pointed me toward the BERSERKER and I came across this video. I don't know much about it at this point except that it is being developed by a professor at Cal Poly San Luis Obispo. It looks very durable and stable, potentially a lot of fun!



A little more information in a press resease here.


F.A.I.T.H. and Sky ping



This was a super packed weekend.

On Saturday morning I rode my bike down to Discovery park and went on a ride with some fellow disabled athletes, one of which was one of the fastest hand cyclists in the world Alejandro Albor who is currently training for the Paralympics in Beijing. We had a great ride and introduced many disabled athletes to the world of Cycling. This event was run by Disabled Sports USA Far West. Check out their Summer Programs.

That night part of the Ride Ataxia II Team (Me, Tess, John Lockwood, Sean, Mike M., Mike B.) traveled to Sunnyvale (South Bay Area) to support a teammate (Bart) and his family during their fund raiser, FAITH (FA In The Heart. This was truly a truly first class event. Dinner was courtesy of Outback Steakhouse. There was a great silent auction with some really impressive items. A live auction featuring a Bar-B-Q for 50 friends, a weekend condo in New York City, and a week in Hawaii (all separate items...). Matt Rupel (17, FA) gave a really nice speech. Phil Bennet (23,FA) presented a check for over $7,000. And I was given the opportunity to tell my story to the crowd. The evening's emcee was Sam Van Zandt of KBAY 94.5. Afterward there was an open bar and music by a truly talented cover band, Millenium Funk Party. We all had a great time meeting new friends and enjoying teammates. On top of all that, the event raised a lot of money, >$50K!

The next day (Sunday) I experienced one of the craziest things. I went Sky ping with my friends Phil (23, FA), Brianne (3?, FA (that's lame, I don't know how old Brianne is)) and Eric. My Dad, Mike, and Brianne's Dad, Paul, Jumped too which was quite amazing, I had no idea they even wanted to.


So as I was saying, this was a crazy ride. Yes, we were strapped to an experienced professional but we still jumped out of a plane at 13,000 feet (2.5 miles).

The plane seemed to take forever to reach the right altitude. I was pretty mellow. Phil was sitting on the ground right by the plexiglass door so he got a closeup of what we were about to experience. Phil has now jumped 3 times and Brianne has jumped 18 times so they were cool and calm the whole time, I think Paul and Mike were the most freaked.

We finally reached 13,000 feet and they opened the door. Then it all went down. Loud wind and screams of terror and excitement as Phil took the plunge. That's when I finally started getting pretty excited (completely horrified). Brianne was right in front of me and she flew out into the chilly wind.

My heart is pounding just looking at this picture.

Then it was go time, before I had time to reconsider we did a somersault out of the plane and I watched as the plane got smaller above me, that was the most terrifying 3 seconds of my life.

Then we turned over and started falling at about 100mph. There was a guy in front of me filming and taking still photos, I looked at him and relaxed a bit (what the heck, falling to the earth, looking another human being in the eye, this is wierd). After a couple seconds I got a little more comfortable and truly enjoyed the next 20 seconds.


The chute finally opened and I realized how fast we were going as I saw the photographer fall away at 100mph.

haha, nice out of control chicken legs

I could see forever as we were still at 3,000 feet.

We did some spirals and made it to the ground quickly to help the others land.



Everyone got down safely and we walked away with an amazing experience. Our jump at Parachute Center in Lodi, CA was worth every penny.

As we were sitting around afterward we were already planning our next jump...

 

 

 

 

 

Subcategories

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


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