FFB-CRI Launching Natural History Study for People with USH2A Mutations

USH2A is a target for retinal-disease researchers, because mutations in the gene are the most common cause of Usher syndrome type 2, which causes combined vision loss from retinitis pigmentosa (RP) and hearing loss from inner ear dysfunction. Also, USH2A mutations are a leading cause of RP without hearing loss (i.e., non-syndromic).

Dr. Eliot Berson, Pioneer in Vitamin A Therapy for Retinitis Pigmentosa, Passes Away

No one in the retinal disease research community brought more passion and commitment to his or her work than Dr. Eliot Berson. As The William F. Chatlos Professor of Ophthalmology at Harvard Medical School, he dedicated himself to clinical care and vision-saving research for people with inherited retinal diseases for five decades.

Foundation Fighting Blindness and Blueprint Genetics Announce Collaboration to Support Genetic Testing and Patient Registry Process for IRD Patients

The Foundation Fighting Blindness (FFB), the world’s leading private funder of research for cures for inherited retinal diseases and Blueprint Genetics today announced a collaborative research study to grow the data in a Foundation-supported patient registry for inherited retinal diseases (IRDs), called “My Retina Tracker”, and, in doing so, advance the clinical trials process.

First Patient Treated in XLRP Gene Therapy Clinical Trial

A 29-year-old British man is the first person to be treated in a gene therapy clinical trial for X-linked retinitis pigmentosa (XLRP). Robert MacLaren, MD, the lead investigator for the trial taking place at the Oxford Eye Hospital in the United Kingdom, says the patient is doing well and has gone home. The trial is being run by Nightstar, a biopharmaceutical company in the U.K.

Unregulated Stem-Cell Therapy Causes Severe Vision Loss for Three Florida Women

A report today in The New England Journal of Medicine (NEJM) describes the cases of three women with age-related macular degeneration (AMD) who lost much of their eyesight after receiving ocular injections of stem cells derived from their own fat tissue. All of the women had good enough eyesight to drive before the procedures. Each paid $5,000 to receive the injections from a private clinic in Sunrise, Florida.

FFB Convenes Experts to Discuss Therapeutic Opportunities for Stargardt Disease

Meeting presenters (left to right): Philip Rosenfeld, MD, PhD; Ilyas Washington, PhD; Peter Charbel Issa, MD, PhD; Elias Traboulsi, MD, MEd; Ulrich Schraermeyer, PhD; Carel Hoyng, PhD; Paul Bernstein, MD, PhD; SriniVas Sadda, MD; Krzysztof Palczewski, PhD; Janet Sparrow, PhD; Artur Cideciyan, PhD; Hendrik Scholl, MD; Patricia Zilliox, PhD (not pictured)

President's Letter

Thank you for your interest in the Foundation Fighting Blindness and its mission to find treatments as well as preventative measures to fight degenerative retinal diseases.

The Foundation Fighting Blindness was established in 1971 and today is the world’s largest non-governmental funder of research for inherited retinal degenerative diseases.  Its success would not be possible without people like YOU who are helping to make a difference and find a cure!

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