The Foundation Fighting Blindness Inc

“Jonathan steinberg and joshua steinberg have a family relationship.”

“In march 2025, ffb amended its bylaws to align with the current structure and operating practices. Notable changes include a reduction in the number of standing committees, the creation of the executive vice chair position, removal of the president as an elected officer, and the introduction of term limits.”

“Members of ffb are known as national trustees. The qualifications and eligibility for membership and the manner of admission into membership is prescribed by resolution of the board of directors. The national trustees are entitled to vote on election of directors.”

“During the annual meeting of the national trustees, members of the board of directors are elected.”

“Data to prepare the federal form 990 is provided to our outside accounting firm for preparation and guidance. After it has been completed, a draft of the federal form 990 is reviewed by the vp, finance and chief operating officer. With the coo's approval, the draft federal form 990 is then made available to all board members. All board members are invited to attend a special meeting of the finance committee to review the federal form 990. A final draft is made available to all board members before filing.”

“In connection with any actual or possible conflict of interest, an interested person (including officers, directors, and key employees) must disclose, in writing prior to any discussion or vote upon a proposal, the existence and nature of his or her personal interest to the chair of the board and chair of the board committee considering the proposed transaction or arrangement. After disclosure of the financial or non-financial interest and all material facts, the interested person shall leave the board or committee meeting while the financial or non-financial interest is discussed and voted upon. The remaining board shall decide if a conflict of interest exists, and if so, whether there is a compelling reason to recommend to the board that the conflict of interest policy be overridden. A quorum is needed for voting and the vote to override shall be by majority and duly noted in the minutes.”

“The executive committee (comprised of independent persons) and the board of directors approves the compensation of the chief executive officer. The executive committee approves the compensation of the other chief officers. On a routine basis, external data provided by outside expert compensation consultants is used to measure reasonableness of salaries to the market place and results are communicated by outside consultants to the board chair/compensation committee. Decisions made by the committee are contemporaneously documented.”

“Ffb's federal form 990 and consolidated audited financial statements are available at www.fightblindness.org. Other public documents including the conflict of interest policy are available upon request through the contact information disclosed on ffb's web site. These documents are available for the same period of disclosure as set forth in section 6104(d).”

“Ffb acts as the common paymaster for the foundation fighting blindness retinal degeneration fund, a related organization. Board members were not compensated for their service on the board, with the exception of the chair of the rd fund board, who was compensated in accordance with the rd fund board's approved compensation policy.”

“The urgent mission of the foundation fighting blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, age-related macular degeneration, usher syndrome and the entire spectrum of retinal degenerative diseases. The foundation is a beacon for those affected by these blinding diseases.”

“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 blinding diseases due to retinal degenerative diseases. The foundation has encumbrances of over $36 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 2025, the foundation's research grants program is funding 104 grants being conducted by more than 133 investigators at 92 institutions, eye hospitals, and universities in the u.s. And around the world. A sampling of the research projects funded are listed below: "defining the underlying causes of retinal degeneration in crb1 disease." jeremy kay, duke university dr. Kay and his team hypothesize that loss of cell-cell connections in the outer retina underlies rp-like aspects of crb1-associated disease, while loss of junctions between embryonic progenitors underlies lca-like aspects. Dr. Kay's team will use multiple models to identify primary site(s) of damage caused by crb1 dysfunction, and explore strategies to fix the damage. They will also work to determine whether these cellular features can be imaged in animals and in patients and be used as an endpoint in future clinical trials. "development of a new gene therapy for autosomal dominant retinitis pigmentosa" denise montell, university of california, santa barbara dr. Montell is pioneering a gene therapy approach to combat retinitis pigmentosa (rp), specifically the autosomal dominant form caused by misfolded rhodopsin protein. By promoting the degradation of misfolded rhodopsin, through overexpression of the zip7 gene, dr. Montell aims to slow retinal degeneration. Additionally, overexpressing the zip7 genea zinc transporter proteinmay relieve cellular stress and prevent photoreceptor cell death in various models of autosomal dominant rp. "characterization and mitigation of aav-induced ocular inflammation" william beltran, university of pennsylvania dr. Beltran and his team are working to improve the safety of gene therapies that use viral vectors to deliver the therapeutic gene to retinal cells. As more ird gene therapies move from the preclinical stage in animal models to clinical trials, there is an increasing recognition of the need to better understand gene therapy-associated uveitis (inflammation). This inflammatory response can impede the therapy's performance and can cause retinal damage.”

“Public health education: during fy25, the foundation continued 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; hosts virtual and in-person educational and networking seminars; and holds quarterly insights forum calls to inform the community about scientific progress. The content includes the latest developments in research and clinical trials, as well as personal stories from members of our community. Additionally, the foundation hosts regional forum presentations that provide timely content to eye care professionals. Chapters bring the foundation's message and mission to life. In fy25, the foundation supported over 47 volunteer-led chapters in 23 states in the us and one chapter in london, uk. Our chapters host 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.”

“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 2025, approximately 8,000 additional members were added to the registry, bringing the total number of registered individuals to approximately 43,000.”

“Refund of previously expended grants 11,693.”