Those who know Fay Grant will tell you she’s a wonderful mother, activist, philanthropist and wife with a generous heart and an immense love for helping others. Nothing makes her happier than making her daughter smile, listening to her husband's dad jokes, giving back to those in need and spending time with those she loves most. A few days before Christmas last year, Fay was diagnosed with a rare degenerative neurological genetic disorder called RFC1 / CANVAS. She struggles daily with neuropathic pain, numbness in her limbs, chronic cough, balance impairment and dizziness. Her progressive symptoms make it challenging for her to be the wife and mother she dreamt she would be, but she never fails to wake up with a loving smile and extreme gratitude for the life she’s been given.
Fay is not alone. She’s had the opportunity to connect with a supportive community of wonderful people also suffering from this rare disorder and they too need your help. RFC1 ataxia is a recently discovered condition that causes disturbances of balance and coordination (cerebellar ataxia), changes in sensation (neuropathy), and inner ear dysfunction (vertigo), alone or in various combinations. Onset usually begins after the age of 35 years. The disease is caused by a repeat expansion within both the maternal and paternal copies of the RFC1 gene and work in Dr. Brent Fogel’s lab at UCLA has shown this to be one of the most common forms of genetic ataxia in North America. The Fogel lab is currently conducting research to 1) understand why expansions in RFC1 cause disease to aid development of symptomatic and curative therapies, 2) determine if carriers of single RFC1 expansions are at increased risk to develop ataxia, and 3) develop patient cohorts for future clinical trials, especially for molecular or gene-based therapies cerebellar ataxia, neuropathy, and vestibular areflexia syndrome (CANVAS).
This fundraiser is a special one. It was created especially by UCLA and the Grant Family to raise funds necessary to give Fay and others suffering from this debilitating disease a better future. Fay always says we must “hold on to hope” no matter what the odds, and our research fund was created for just that: to fund groundbreaking research that will bring hope to those suffering from this disorder. With your support, Dr. Brent Fogel, M.D., Ph.D., the Director of the UCLA Neurogenetics Clinic and a member of the UCLA Ataxia Center, will receive crucial funding necessary to develop a gene therapy that could cure Fay’s disease.
Gifts to our Grant Family RFC1 / CANVAS Research Fund directly support Dr. Fogel’s RFC1 research, with 93.5% of funds going directly to his laboratory. Thank you so much for taking the time to read our story and we hope you’ll take the time to share.
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