12/13/2023 0 Comments Usher syndrome blogRebecca currently serves as a board director at the Usher Syndrome Society.īorn and raised in the San Francisco Bay Area, she currently lives in New York City. While all three types involve progressive vision loss due to retinitis pigmentosa (RP), they are categorized according. Usher syndrome has been classified into three major subtypes: I, II, and III. ![]() Her critically acclaimed memoir, Not Fade Away: A Memoir of Senses Lost and Found received several awards and is currently in development to be made into a major motion picture by Netflix Studios. Usher syndrome, also known as Hallgren syndrome, is a rare genetic condition that is characterized by progressive vision and hearing loss. usher syndrome, usher syndrome type 2, visual impairment. Kilimanjaro, swimming from Alcatraz to the shore in the San Francisco Bay, and competing in the Civilian Military Combine (CMC) races add to Rebecca’s extraordinary feats. Tags: advocacy, ASOS, blog, blogger, blogging. Participating in the 600-mile AIDS Lifecycle ride, summiting Mt. As a community and a coalition, we have created a very vital registry, we raise public awareness, connect researchers with the Usher community, and we have lobbied Capitol Hill to make Usher syndrome research a higher. Our Own the Equinox adventure will spread from Australia to Alaska. Additionally, Rebecca has been honored with prestigious awards for her advocacy work, and has been the keynote speaker for esteemed organizations. Josh has Ushers Syndrome, with resulting Retinitis Pigmentosa and hearing loss. The Usher Syndrome Coalition is building a global community. She has presented for TEDx, and has been featured on many TV shows and in numerous publications. She is the narrator of PBS American Master’s biopic about Helen Keller. ![]() Rebecca has a thriving psychotherapy practice with two masters’ degrees from Columbia University. Usher Syndrome refers to a group of genetic conditions that have both hearing loss and progressive deterioration in vision due to Retinitis Pigmentosa (RP). ![]() Rebecca Alexander is an author, psychotherapist, disability advocate, group fitness instructor, and extreme athlete who is almost completely blind and deaf.
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