Dear Family and Friends,

As some of you already know, our 16 year old son, Sam, was diagnosed with Friedreich’s Ataxia in August 2006.  Friedreich’s Ataxia is a very rare genetic, neurodegenerative, multi-system, life-shortening disorder which afflicts about 1 in 50,000 people.  Onset of symptoms usually occurs between the ages of 5 and 15.

Friedreich’s Ataxia causes a variety of serious health problems including:
•    progressive muscle weakness and loss of coordination (ataxia) in the arms and legs
•    vision impairment, hearing loss, and slurred speech
•    aggressive scoliosis (curvature of the spine)
•    diabetes mellitus or carbohydrate intolerance
•    fatigue that severely impacts daily life
•    a serious heart condition (enlarged heart — hypertrophic cardiomyopathy)
The progressive nature of this disorder causes the loss of muscle strength and control which leads to motor incapacitation and the full-time use of a wheelchair -- usually by the late teens or early twenties. The mental capabilities of people coping with Friedreich’s Ataxia, however, remain completely intact.  Those of you, who know Sam, know how deeply passionate he has always been about sports:  playing them, watching them, and talking about them.   This relentless disorder has already robbed Sam of his ability to play baseball, basketball, rollerblade, cross-country ski, hike, and chase after his brother.  Walking is becoming more and more difficult.  Words cannot describe the devastation and anguish we feel. 
Currently there are no treatments or cures for Friedreich’s Ataxia.  However, there is a considerable amount of research being done.  In 1996, the Friedreich’s Ataxia gene was discovered by a team of scientists led by Dr. Massimo Pandolfo.  This discovery has revolutionized the study of Friedreich’s Ataxia, leading to an extraordinarily rapid explosion of new and promising research. 
While time is not on our side, the recent advancements in Ataxia research are promising.  We are turning our anguish into hope by working to help find a cure for this disorder by raising funds for Friedreich’s Ataxia Research.  Our entire family, Tom, Amy, Sam and Max, will be participating in Ride Ataxia II, a fundraising bicycle ride from Sacramento to Las Vegas.  We will be joining Ride Ataxia at the halfway point in Bakersfield, California on March 22, 2008 and riding for 6 days, finishing the ride in Las Vegas, arriving for the start of this year’s National Ataxia Foundation Conference. At the conference, we will meet with other families affected by this disorder and will have the opportunity to meet and talk with the researchers as well. 
Your support will give our family and all the families affected by this disorder the hope we so desperately need.   Because Friedreich’s Ataxia is so rare, funding through traditional sources has been limited, which makes your contribution even more important. We hope that you will choose to support Sam and our family in our efforts to find a cure for Friedreich’s Ataxia and a cure for Sam.   Research is Sam’s only hope. 
Enjoy today,
Amy & Tom



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