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 $50 million, not included on our june 30 financial report, for active research projects that have future research milestones. Our research oversight committee's spending plan includes spending at an average of $21 million annually to support future research.as of The end of our fiscal year 2023, The Foundation's research grants program is funding 93 grants being conducted by more than 96 investigators at 71 institutions, eye hospitals and universities in The u.s. and around The world. A sampling of The research projects funded are listed below. "evaluating mitigation strategies for intravitreal viral vector-mediated inflammation across animal models. "kathryn pepple, md, phd, university of washingtondr. Pepple is investigating novel strategies for mitigating ocular inflammation which can result from intravitreal injection of viral gene therapies. She is evaluating animal model data and performing detailed immunologic characterization of The non-human primate eyes during ocular inflammation to provide clinical-pathologic correlations and biomarker validation for use in human clinical studies. A robust and evidence-based approach to preventing ocular inflammation following intravitreal adeno-associated virus (aav)-mediated gene therapy is a critical unmet need. "a novel, rationally designed pharmacological approach to countering vision loss in a preclinical model of mertk-associated retinitis pigmentosa. "silvia finnemann, phd, fordham universitydr. Finnemann and her team are determining if an early-onset inflammatory response in retinal pigment epithelial (rpe) cells precedes photoreceptor degeneration. Rpe cells provide provide critical support for photoreceptors. If successful in uncovering this novel disease pathway, a therapeutic strategy testing anti-inflammatory drugs for mertk-associated retinitis pigmentosa will be proposed to prevent or significantly delay retinal degeneration. "deciphering The impact of abca4 genetic variants of unknown significance in inherited retinal disease prognosis. "esther biswas-fiss, ms, phd, university of delawaredr. Biswas-fiss is using computational modeling and experiments to determine whether abca4 variants of unknown significance (vuss) lead to abca4-related disease. Resolving these vuss is critical for patients to meet inclusion criteria in clinical trials for abca4 therapies. Mutations in abca4 cause The vast majority of stargardt disease cases.
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 within The ird research and clinical communities about people with an inherited retinal disease to help accelerate The discovery of treatments and cures. During fiscal year 2023 approximately 3,344 additional members were added to The registry, bringing total registered individuals up to 25,160.
Public health education:during fiscal year 2023, 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 foundations resources and research on The inherited retinal disease space. To keep our constituents and professionals informed, The Foundation publishes extensive content via website and social media/email channels; distributes a newsletter online and in print; holds quarterly insights forum calls to inform The community about scientific progress. The content produced includes The latest developments in research and clinical trials, and 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 eyecare professionals. Chapters bring The Foundation's message and mission to life. In fy23 The Foundation supported over 45 volunteer-led chapters in 23 states. The chapters held 80 in-person speaker presentations, socials, and other outreach activities, hosted 4 vision seminars, and co-hosted two virtual vision webinars with The Foundation with over 1,000 people in attendance for each webinar. This year, The chapters are hosting nearly 90 in-person speaker presentations and launching several new chapters in new states.