Dear Friends:

Five years ago, at the age of 21, our daughter, Jessica, was diagnosed with a rare, progressive, neurodegenerative disorder named Friedreich's Ataxia (FRDA). FRDA is a life-shortening, genetic disorder, which afflicts about one in 50,000 people. Surprisingly, about 1 in 90 Americans of European ancestry carry one affected gene. Symptoms include impairment of vision, hearing, and speech; scoliosis (curvature of the spine); diabetes; a serious heart condition; and loss of strength and coordination in the legs and arms.

The onset of symptoms is usually in childhood (before the age of 15) and most patients need a wheelchair full-time by their 20's. Although Jessica was diagnosed at an older age, this relentless disorder has now robbed Jessica of her ability to walk across a room without the help of someone, a walker, or a wheelchair. She can no longer enjoy many independent activities which most people in their teens and 20's enjoy. Sadly, there are NO treatments or cures.

Words cannot describe the devastation we feel, but we are working hard to find solution. The FRDA gene was found in 1996 by a team led by Dr. Massimo Pandolfo. That discovery has revolutionized the study of FRDA, leading to an extraordinarily rapid explosion of findings relevant to the disorder. There is real HOPE AND EXCITEMENT in the FRDA SCIENTIFIC COMMUNITY.

Due to the relatively small population affected by this disease, however, funding through the traditional sources has been limited. Therefore, we decided to redirect our anguish towards efforts to accelerate research, and are working toward raising funds for the Friedreich's Ataxia Research Alliance (FARA). The scientific projects FARA is nurturing right now, including clinical trials over the coming year, look so promising that there is a real possibility the results will lead to effective treatments.

Our grassroots fundraiser is an auction. The UP, UP AND AWAY WITH FA AUCTION, will be held on October 24, 2008. All of the funds raised will go directly to FARA. We hope you will share our concern and will help. Because FARA is a 501(c)(3), tax-exempt organization, your contribution is fully tax-deductable. If you already support various charities, we ask that you consider adding one more to your list:

Friedreich's Ataxia Research Alliance (FARA). You may email us at deb_austin@comcast.net for more information and our address at which to make a direct donation.

Part of our mission is to raise the level of awareness of Friedreich's Ataxia, so please share this with those who might be sensitive to our plight. Although heartbroken by this disease, we are cautiously optimistic about the direction of research. With your help, we hope and pray that the research you support will hasten a breakthrough that will not only help Jessica, but all patients and their families coping with this rare, relentless disease.

Thank you for caring,

Dick and Debbie Austin