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Answers at Last: How Genetic Testing Revealed Zach’s Bardet-Biedl Syndrome
Beacon StoriesFor years, Zach Lovell lived with vision loss that didn’t have a complete explanation. Genetic testing through the Foundation’s My Retina Tracker® Program revealed he had Bardet-Biedl syndrome (BBS), finally connecting decades of health challenges and bringing long-awaited clarity to him and his family. Today, Zach is looking ahead with purpose — supporting research through the Foundation, planning for his future, and encouraging others to do the same.
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Watch Mike’s powerful story and see how your donation drives research toward treatments and cures for retinitis pigmentosa and blinding diseases. Donate today.
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Beacon Stories
We’re honoring National DNA Day with the Danny family! When Sarah and A. J. found out their oldest daughter Lucia had Stargardt disease, it was a challenge to process her diagnosis. And then they realized their other five children could also be affected. Through genetic testing, they learned their five-year-old daughter Sarafina also has Stargardt disease. Now, Lucia and Sarafina have a bond like no other, and call each other the “Stargardt Sisters.”
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“The Future Holds Promise” on International Day of Women and Girls in Science
Beacon StoriesInternational Day of Women and Girls in Science is celebrated globally to recognize the critical role women play in science, technology, engineering, and mathematics. To honor this vital day, the Foundation is sharing the story of Dr. Esther Biswas-Fiss.
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New Report: Vitamin A Supplementation Provides No Vision Benefit to RP Patients
Research NewsThe report also concludes that vitamin E supplementation accelerates vision loss for RP patients
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I Am Blind, but I Am Not the Blindness
WellnessDr. Ann Wagner is a Board-Certified Clinical Psychologist who has worked at the Minneapolis VA HCS for the past 23 years, serving veterans and their families. She works primarily on the PTSD Clinical Team providing evidenced-based assessments and interventions for PTSD and other trauma-related problems. Dr. Wagner herself is legally blind due to retinitis pigmentosa.
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Telling His Story of Resilience
Beacon StoriesChad has been working in the corporate world for the last 20 years. But after becoming the first blind executive to graduate from the Harvard Business School leadership program, he realized his purpose in life is to help others by sharing the lessons he learned while losing his eyesight. He can now add published author to his repertoire with his new book, Blind Ambition.
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Nouvelle Lumière: French Bionic Retina in a Human Study
Research NewsThe French retinal implant developer Pixium quietly launched a clinical trial for its Intelligent Retinal Implant System 1 (IRIS1) in France, Austria and Germany.
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Proving a Vision-Saving Treatment Works
Research NewsThe information gleaned from ProgSTAR will be of enormous value in designing future clinical trials for Stargardt disease treatments.
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Research News
Part B of the trial will enroll nine adult patients as well as three pediatric patients.
