Program areas at FFB
Research: The Foundation Fighting Blindness, Inc. (The Foundation) funded researchers are achieving remarkable success in discovering, testing, and delivering to patients a wide range of promising therapies to prevent, stop The progression of, and cure Blindness due to retinal degenerative diseases. The Foundation has encumbrances of over $43 million, not included on our june 30 financial report, for active research projects that have future research milestones. Our science committee's spending plan includes spending at an average of $28 million annually to support future research.as of The end of our fiscal year 2024, The Foundation's research grants program is funding 108 grants being conducted by more than 135 investigators at 88 institutions, eye hospitals and universities in The u.s. and around The world. A sampling of The research projects funded are listed below. "in vivo retinal rna editing using The cellular adenosine deaminase acting on rna (adar) enzyme." - hadassah-hebrew university medical centerdoctor sharon and his team will advance rna editing technology to correct specific retinal disease-causing mutations. By developing and administering novel biological machinery to The retina that uses enzymes called "adenosine deaminase acting on rna or adar that serves as molecular editors to correct a specific mutation in rna. The technique is like gene editing but instead of editing The gene, this technique edits rna, which is The transcript or message read from The gene to produce protein. "testing The efficacy of rt011, a deuterated form of dha, as a mutation independent therapy in retinitis pigmentosa." - karsten schmidt, biojivabiojiva is testing if rt011, a novel mutation-independent oral drug candidate, can preserve retinal cones and cone function despite rod death in retinitis pigmentosa. To accomplish this goal, this project will evaluate rt011 (d-dha [docosahexaenoic acid]), a deuterated dha analogue in two complementary animal models of chronic rp (a juvenile pig model with early rp onset and an adult mouse model with late rp onset). "aav- anc80 gene therapy platform to treat vision loss caused by rpgrip1 mutations." - ashley winslow, odylia therapeutics.doctor winslow is leading The team at odylia therapeutics to advance a gene therapy for leber congenital amaurosis (lca6) resulting from rpgrip1 mutations. The therapy (ot-004) employs The anc80 aav capsid to deliver a functional rpgrip1 gene to photoreceptors. Odylia will carry out vector production for toxicology studies, assess vector biodistribution and transgene expression, and evaluate vector safety in a 90-day toxicology study.
My retina tracker registry:the Foundation maintains a research database of people and families affected by rare inherited retinal degenerative diseases. The registry is designed to share de-identified information about people with an inherited retinal disease within The ird research and clinical communities to help accelerate The discovery of treatments and cures. During fiscal year 2024, approximately 10,000 additional members were added to The registry, bringing The total number of registered individuals to over 35,000.
Public health education:during fiscal year 2024, through our chatlos Foundation public education program, The Foundation aimed to continue to provide education and support to people affected by retinal degenerative diseases. The Foundation also fields a team of professionals focused on educating ophthalmologists and optometrists on The latest advancements with The Foundation's resources and research on The inherited retinal disease space. To keep our constituents and professionals informed, The Foundation publishes extensive content via The website and social media/email channels; distributes a newsletter online and in print; produces and shares educational podcasts with leading experts in The space; and holds quarterly insights forum calls to inform The community about scientific progress. The content produced includes The latest developments in research and clinical trials, as well as personal stories from members of The Fighting Blindness community. Additionally, The Foundation holds continuing medical education courses twice a year, focused on providing timely content to eye care professionals. Chapters bring The Foundation's message and mission to life. In fy24, The Foundation supported over 47 volunteer-led chapters in 23 states and expanded out of The us by adding two new chapters in london, uk, and paris, france. Our chapters launched a new program, vision connection, an enriching and supportive gathering for The blind and low-vision community. Each session covers educational presentations, community engagement, fundraising, and interactive q&a sessions.