Even as a newborn baby, we knew our son Preston would grow into a hard-working, smart, strong, and independent individual. What we didn’t know was that eight years later, he would be using these qualities to battle a rare genetic neurodegenerative disorder called Ataxia with Oculomotor Apraxia Type 1 (AOA1).
Instead of playing sports and bike riding, Preston’s after school activities include Physical, Occupational, and Speech therapies aimed at slowing down the progress of this disease.
Preston was diagnosed with AOA1 in March 2021 and the initial diagnosis was devastating. Despite his challenges, Preston thrives. He is an excellent student, a budding scientist, and a knock-knock joker extraordinaire! In addition to therapy, he continues to participate in swimming, sailing, Cub Scouts, and adaptive baseball, while squeezing in time to hang out with his best friends and close family. We couldn’t be prouder of the young man that he has become!
AOA1 is a very rare disorder impacting only a handful of people in the United States. Symptoms include challenges with balance and coordination, which will continue to regress over time. There is currently no direct treatment or cure.
This is where you come in.
Brent Fogel, M.D., Ph.D, Director of the UCLA Neurogenetics Clinic and a member of the UCLA Ataxia Center is launching research to develop a groundbreaking gene therapy that has the potential to stop the progression of this disease. Gene therapy uses novel technologies to repair defective genes and has proven to be effective for a number of other rare genetic disorders.
Gifts to the Gale Family AOA1 Research Fund directly support Dr. Fogel’s research, with 93.5% of funds going directly to his laboratory. Your financial support is critical for moving this groundbreaking research forward and helping to find a cure to this terrible disease.
If you would like to make your gift by check via USPS, address the check to The UCLA Foundation and write Gale Family Fundraiser in the memo line. Please mail the check to The UCLA Foundation, PO Box 7145, Pasadena, CA 91109-9903. If you have any questions, please contact Katie Brown at KLBrown@mednet.ucla.edu.
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