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Advocating for the Foundation Through Professional Outreach
Beacon StoriesAs a longtime supporter and advocate for the Foundation Fighting Blindness, Lora has recently begun working with the Professional Outreach team. Lora’s work helps eye care professionals in the Philadelphia region provide vital resources for their patients with inherited retinal diseases.
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Foundation Fighting Blindness Announces Over $9 Million in New Research Awards for FY2025
Research NewsThe Foundation Fighting Blindness is proud to announce the funding of 16 innovative research projects in Fiscal Year 2025, totaling over $9 million in new grants.
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Honoring Karen Petrou: A Visionary Leader and Champion for the Community
Foundation NewsRemembering Karen Petrou, whose strategic vision, personal courage, and unwavering commitment helped shape the future of inherited retinal disease research.
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Patient Registries Help Advance Research for Rare Diseases
Research NewsMany registries enable patients to collect and track information about their health, so they can take an active role in managing their care.
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To Treat an Inherited Retinal Disease, It's Good to Know Exactly What's Wrong with the Gene
Research NewsIdentifying mutations cannot only help deliver a prognosis for a patient, it can direct them to clinical trials for therapies to save their vision.
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Charlie Kramer: Life Coach for the Disabled
Beacon StoriesRetinitis pigmentosa (RP) runs in Charlie Kramer’s family, so it wasn’t a surprise when he was diagnosed at a young age. But now, at 29 years old, Charlie is following his passion for helping and empowering others as a full-time life coach for those with disabilities.
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RD Fund Launches Opus Genetics to Advance Gene Therapies for Inherited Retinal Diseases
Research NewsFirst two programs are for Leber congenital amaurosis: LCA5-lebercillin and LCA13-RDH12
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FFB-CRI Launching Natural History Study for People with USH2A Mutations
Research NewsThe study — known as RUSH2A (“R” stands for “rate of progression”) — is beginning in spring 2017 and will take place at about 20 clinical sites around the world. RUSH2A investigators will use a variety of technologies to monitor changes in vision and retinal structure to document and analyze disease progression.
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ProQR Receives FDA Authorization to Launch Clinical Trial for USH2A Therapy
Research NewsProQR, a biotech in the Netherlands developing therapies for rare diseases, has received authorization from the US Food and Drug Administration to launch a Phase I/II clinical trial for QR-421a, its treatment targeting mutations in exon 13 of the USH2A gene.
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Blind Guy Biking: Enduring the Trails for Stargardt
Beacon Stories Fundraiser Success StoriesChris Smith, a mountain bike enthusiast who was diagnosed with Stargardt disease, transformed his bike into a lifeline after losing his driver’s license. Now, 15 years later, he’s tackling the grueling 2,745-mile Tour Divide race while raising funds for the Foundation Fighting Blindness.
