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FARAFARA Cure FA

Foolkiller 2010

Hi Team FARA fans! We mentioned a few weeks ago that Team FARA is not only for cycling, the Team extends to anyone who wants to make progress for the cause...so meet Team Foolkiller:
 

"In September 2008, just before her 13th birthday, our daughter, sister, and friend, Grace, was diagnosed with Friedreich’s Ataxia (FA), a degenerative neurological disease for which there is presently no treatment or cure. The diagnosis came after several years of trying to find out what was causing Grace’s balance and gait problems. Finally, a genetic test at Mass General confirmed what the doctors suspected. The news was life-changing for each of us in the Hopkins family. We found out everything we could about FA, and none of what we learned was encouraging. We learned that Grace can expect to be in a wheelchair within a few years, gradually lose her abilities to move, speak and see and to develop a heart disease which is often fatal for FA-ers at a young age. We found out that FA is a very rare disease and is sort of like winning the multi-state lottery, as far as the odds go.

We learned some good things, however. We learned to have strength in our family and our faith. We learned that we have the best family, friends and neighbors one could hope for. We learned about the FA Parents Group, where we have met the most courageous and generous people God produces, and where we can share our experiences, joys and sorrows. And we learned about FARA – the Friedreich’s Ataxia Research Alliance – a group of far-seeing and dedicated folks who are providing real hope for FA-ers through funding some very promising research and treatment avenues, some of which are in clinical trial phase right now. FARA consists of FA-ers and their families and friends who together have put us on the road towards understanding and beating this disease. But it is a race – for Grace and for all FA-ers waiting for a treatment and, hopefully, a cure. That is why it is so important to help out at this time.

One of the ways we decided to help is through an idea my neighbor, Web Barrett, came up with. We had been hiking the White Mountains every summer for the past few years – Web, myself(Tom), Web’s son, Kyle, and Francis. We started with Mount Washington and have covered a few additional 4,000’ + peaks since. (Web’s done most of them already a few times over). This year, we decided to turn the climb into an opportunity to raise awareness and fund research for a cure for FA, by raising the FA banner over at least five 4,000’ peaks. We decide to name the climb the “FoolKiller 2010,” after one of the peaks. This year Clare will round out our five member Team FARA. Our five member team will be hiking 5-8 mountains, all over 4,000 feet, within five days and four nights.

TO DONATE:
You can help out with a generous tax-deductible donation to FARA, by clicking here:

https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/teamfara/team.do?participationRef=968.0.194552948
Also, check out our other sites sites:

http://www.facebook.com/event.php?eid=135470533148091

http://sites.google.com/site/teamfarafoolkiller2010/home/grace

For more information on FA and FARA you can visit: http://www.curefa.org/"


About the Author

Kyle Bryant

Kyle Bryant

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