Foundation Fighting Blindness

April 3, 2025. In this episode of Eye on the Cure, Jen Bernstein at Horizon Government Affairs, and Sharon King of Taylor’s Tale, talk to host Ben Shaberman about how to schedule and conduct a visit with your House Member in your local district to advocate for important issues. With federal eye research funding at great risk and a Congressional district work period coming in mid-April, now is an i...

March 21, 2025. Professor Michel Michaelides, a world-renowned clinical researcher for inherited retinal diseases at Moorfields Eye Hospital and University College London, talks to host Ben Shaberman about the extraordinary vision improvements for young blind children receiving gene therapy for Leber congenital amaurosis 4 (LCA4). Professor also talks about emerging therapies in clinical trials fo...

Patients with worse vision at trial enrollment had greatest vision improvements.

The technology was previously funded by the Foundation for the treatment of retinitis pigmentosa and dry age-related macular degeneration.

March 7, 2025. Aaron Nagiel, MD, PhD, a retina surgeon at Children’s Hospital Los Angeles, talks to host Ben Shaberman about how gene therapy is administered to the retina, what the surgery and recovery is like for patients, and the vision improvements for young patients receiving LUXTURNA, the first FDA-approved gene therapy for the eye or an inherited condition. Dr. Nagiel also discusses other r...

In earlier clinical trials, the emerging gene therapy greatly reduced the treatment burden associated with injections of approved anti-VEGF therapies.

MeiraGTx hopes to apply for marketing approval in the UK for the gene therapy.

February 21, 2025. Ricky Enger, the Director of Practical Help for Hadley, talks with host Ben Shaberman about her personal and professional journeys as someone born completely blind and the many assistive and accommodative technologies that are helpful to people with low vision. At Hadley, Ricky develops technology workshops and other community initiatives for older adults new to vision loss.

Perceive Pharma is a spin out of Perceive Biotherapeutics.

Though unaffected by vision loss, she brought great passion to driving the Foundation’s mission.

January 24, 2025. Aniz Girach, MD, the chief medical officer at SpliceBio, talks to host Ben Shaberman all about the company’s emerging protein-splicing therapy for Stargardt disease which has received clearance from the FDA to move into a clinical trial.

The Foundation is a founding investor in Atsena.

January 10, 2025. Damon Lembi talks to host Ben Shaberman about his journey as a college baseball star, father, and CEO of Learnit (a live learning platform), and how the diagnosis of an inherited retinal disease informs his leadership style, personal growth, and relationships. Damon is also a best-selling author and host of the Learn-It-All podcast.

The company is also planning to conduct the clinical trial at sites in the EU.

December 20, 2024. Dr. Sheldon Rowan, a professor and researcher at Tufts University, talks to host Ben Shaberman about the impact of the glycemic index, microbiome, and diet on the development of age-related macular degeneration and optimization of overall retinal health. Dr. Rowan will also discuss his grant from the Foundation and the Free Family for studying diet and AMD risk. The grant is als...

The company has also launched a natural history study of patients to inform the planned clinical trial.

Known as ultevursen, the USH2A RNA therapy was licensed from ProQR.

December 6, 2024. Bob Bell, PhD, chief scientific officer at Ascidian Therapeutics, talks with host Ben Shaberman about STELLAR, the company's Phase 1/2 clinical trial for its emerging RNA-rewriting therapy for Stargardt disease (ABCA4 mutations). Dr. Bell also provides overviews of Stargardt disease, the role of RNA in cells, and the advantages of RNA re-writing over other genetic treatment appro...

The companies are planning a Phase 3 clinical trial for the promising gene therapy.

November 15, 2024. When the Lemay-Pelletier family from Montreal learned that three of their four children were losing vision from retinitis pigmentosa, they made the bold decision to spend 15 months traveling the world to give their kids as many visual memories as possible. Podcast host Ben Shaberman talks to the family about their many incredible adventures and the National Geographic documentar...

The Foundation funded Dr. David Gamm for development of the induced pluripotent stem cell approach to be used in the trial.

The 36-participant trial will take place at multiple sites in Australia.

October 25, 2024. Sharon King, co-founder and president of Taylor’s Tale, talks to host Ben Shaberman about her family's journey when her daughter Taylor was diagnosed with Batten disease, a life-limiting, neurodegenerative disease that includes vision loss as a symptom. Taylor’s Tale is raising awareness of, and research funding for, Batten disease. Sharon is also a tireless advocate for the need...

Merger will provide additional capital for gene therapy development.

#WhiteCaneDay is here! Let's celebrate the strength and independence the white cane symbolizes! Do you use a white cane or other tools? Share your story with #ShareYourVision! www. FightingBlindness.org/ShareYourVision