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Vision: A Memoir of Blindness and Justice — A New York Times Editor’s Pick
Foundation News“Tatel’s humility and tenacity shine. The result is a stirring reflection on an extraordinary life,” Publishers Weekly
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Learning to Fall After Vision Loss
Beacon StoriesWhen Justin’s vision loss progressed quickly due to retinitis pigmentosa at 25 years old, he thought skateboarding wouldn’t be possible anymore. Ten years later, with the help of his white cane and audio devices, Justin is now working to enhance accessibility in skateboarding for the blind and visually impaired community.
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Managing Your Mindset, Embracing Your Voice
WellnessCharity’s recent rapid decline in vision due to RP and her daughter’s diagnosis with RP has caused her to open up about her vision loss journey. After getting involved with the Foundation, Charity now feels like she has a voice to help others in the visually impaired community.
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Erin’s Unwavering Determination, Then and Now
Beacon StoriesDiagnosed with retinitis pigmentosa at a very young age, growing up, Erin never let her progressive vision loss stop her from keeping up with her friends and siblings. Throughout the 1990s, Erin was featured in several Foundation Fighting Blindness campaigns to raise funds for retinal research. Today, 34-year-old Erin is resilient as ever, still hopeful research will one day find her a cure.
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Consortium Genetically Tests 40 Percent of People in Israel with IRDs
Research NewsPatient benefits from genetic testing for IRDs include confirmation of their clinical diagnosis, identification of the disease inheritance pattern and risk for other family members, and determination of human studies for emerging therapies that may be appropriate for them.
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Beacon Stories
13 year old Kailey Reichardt’s personal essay about her little sister Ashlyn, who was diagnosed with Leber congenital amarosis (LCA) at a young age. Kailey is a Beacon for other siblings impacted and going through similar situations.
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Beacon Stories
“I try not to get my hopes up too much, but I never lose hope; I’m determined. I just want to see my son’s face, see him get married, & see my grandchildren. I encourage everyone with a retinal disease to get a genetic test & to never ever give up hope.“
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Stem-Cell Therapy Clinics Remain Inadequately Regulated, Pose Risk to Patients
Research NewsIf a clinic is charging for a stem-cell treatment or procedure for an IRD, it is probably not legit. The expense to the patient is a major red flag.
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Pixium Vision Reports Progress in Development of Two Advanced Bionic Retina Systems
Research NewsBoth approaches show strong, near-term potential for providing meaningful vision to people who are otherwise blind from retinal diseases such as retinitis pigmentosa and age-related macular degeneration (AMD).
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Orphan Drugs Get Special Treatment
Research NewsFor developers of treatments for rare diseases — including inherited retinal conditions — “orphan” status provides valuable benefits, such as tax incentives, access to special research grants and assistance with clinical trial design.
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