Edith Jacquin's Personal Page
Once again it is time for RideAtaxia Philly, the annual event to raise money for the Friedreich's Ataxia Research Alliance (FARA). I am attending again and will help raise awareness and donations to find a cure for Friedreich’s Ataxia (FA). This debilitating, life shortening neuromuscular disease affects my granddaughter Laura. I’ll attend with my family, FA families, friends. Last year my Granddaughter's team raised over $38,000 for FA research.
Laura was diagnosed with Friedreich’s Ataxia nineteen years ago when she was 11. Friedreich’s Ataxia is a progressive genetic disease that affects all of her muscles, debilitating strength, coordination, and balance. Laura has lost her ability to walk or write and it affects her speech, hearing and especially vision. Having this disease has completely changed the course of Laura's life. Despite graduating from Berry College, the progression of the disease has kept her from pursuing a career.
The gene for FA was discovered in 1998. That same year the Friedreich’s Ataxia Research Alliance (FARA) was founded to organize fundraising and focus efforts specifically on FA research and pharmaceutical development. Recently, an increased interest from researchers and pharmaceutical companies has initiated developing treatments and ultimately a cure for FA.
Laura recently provided an article to FARA describing the progression of her optic nerve degeneration. She is hopeful it will inspire researchers to develop a cure for the blindness caused by FA. She enjoyed writing the article, although it was difficult for her to relive the experiences encountered during her vision loss.
This year scientists and doctors continue their work in several active clinical trials. Hopefully, one of these studies will identify the first treatment for FA. With the prospect of gene therapy coming soon, there is still much work to be done! The possibility of this goal grows with every donation made to FARA and in turn every trial that is completed!
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