Search
Selected Filter
Displaying 121–130 of 188 diseases results
-
Fighting RP on the Foundation’s Frontline
Beacon StoriesMichelle Glaze, the Foundation’s associate director of professional outreach, shared her personal story of being diagnosed with retinitis pigmentosa (RP) in the film ‘Decoding disease.‘ In her own words, Michelle also describes her journey with genetic testing and the Foundation Fighting Blindness’ impact on her life.
-
Blind YouTuber Finding His Spot in Life
Beacon StoriesYouTuber Sam Seavey was diagnosed with Stargardt disease when he was just 11 years old. Sam didn’t fully accept his visual impairments until his early 30s. Now he’s helping others through “The Blind Life,” which is currently the most extensive resource for assistive technology on the internet.
-
Beacon Stories
From stargazing to bird watching, Michael has been an enthusiast of all things science from the age of 12. When Michael was diagnosed with retinitis pigmentosa at 30 years old, he knew he wasn’t going to give up his dream of becoming a record-setting birder. In his own words, Michael shares how he’s overcome his vision loss and continued to pursue his birding passions with “birding-by-ear.”
-
Girl Scouts are Changing the World One Crosswalk at a Time
Beacon StoriesInspired by their troop leader diagnosed with Usher syndrome, Girl Scout Troop 1673 is hoping to change the world, one crosswalk at a time, with their Paint It Yellow challenge.
-
A Mother’s Perseverance for Her Son
Beacon StoriesAfter learning Preston needed to wear an eye patch, his mom Carmen wanted to find resources and support on eye patching, but she couldn’t pinpoint anything on the internet pertaining to children’s books about her son’s specific conditions. That’s when Carmen decided to write a children’s book to educate children and parents on why someone wears an eye patch.
-
Foundation Fighting Blindness and Usher 1F Collaborative to Launch Natural History Study
Foundation NewsThe project will help identify outcome measures for future clinical trials of potential USH1F therapies.
-
Ambitious Swimmer Spreading Optimism
Beacon Stories26-year-old Becca is a two-time Paralympic swimmer for Team USA, diagnosed with Usher syndrome type 1 (USH1) at only four years old. But she has never let her diagnosis with Usher syndrome stop her from doing exactly what she puts her mind to.
-
Beacon Stories
18-year-old Marty Dubecky has a very unique decision to make. There are currently four gene therapy clinical trials for him to choose from to enroll in, which would have been unheard of 15 years ago when he was first diagnosed with XLRP.
-
George Dolan: Cherished Friend and Community Advocate
Beacon StoriesGeorge was well-known in his community for his integrity and dedication to helping everyone around him.
-
Managing Your Mindset, Embracing Your Voice
Beacon StoriesCharity’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.
.jpg)
