Friedreich'S Ataxia Research Alliance

“Copies of 990 are distributed to board members for review and approval prior to filing.”

“All new and existing board members are required to annually review and sign a conflict of interest policy and report disclosures.”

“Evaluation and compensation committee performs employee evaluations and determines salary increases on a yearly basis for all employees. Committee examines benchmark data in determining salaries for president, ceo, cso and director finance administration.”

“Form 990 is available on the organization's website as well as guidestar.org and charitynavigator.org financial statements are available on the organization's website. The governing documents, conflict of interest policy and form 1023 are available upon request.”

“Research and grant program fara deploys financial resources to accelerate research for friedreich's ataxia (fa). In 2024, fara awarded $10+ million in research funding. This included 46 grant projects through fara's investigator-initiated grant program, institutional based research, and fara directed projects. It also included funding a patient registry and longitudinal natural history through the fa global clinical consortium and support for community awareness which are described in the second and third program sections below. Fara grant program: fara's investigator-initiated grant program awarded twenty-six new grants and approved continued funding for twenty grants. Researchers on five continents are receiving research funding from fara. The program is a competitive funding mechanism that supports research to further the understanding of fa and promote therapeutic discovery and development. Fara prioritizes funding projects that fill gaps in knowledge of disease mechanisms, support early development of therapeutic interventions, establish and advance the development of tools for drug developers and academic researchers, and focus on clinical research and trials. Several of these grants were co-funded with fara's fa advocacy group partners; this collaborative approach both increases the number of available research dollars and helps to minimize duplication of effort. With fara's goal in mind of inspiring and supporting junior investigators and building the next generations of fa scientists, in 2024, fara awarded grants to 11 junior investigators. Fara has also identified opportunities to fund research at institutions where there are multiple investigators with an expertise and commitment to fa research and/or opportunity to leverage technologies, innovation or new growth to the fa community. By establishing these institutional funding programs, fara can promote collaboration and synergy across basic, translational and clinical research, provide a longer-term commitment for research, attract new investigators, and leverage the institutions resources and engagement. Fara provides institutional based research support for the fa center of excellence at children's hospital of philadelphia/ penn medicine (university of pennsylvania) and the fa accelerator program at the broad institute. Friedreich's ataxia center of excellence, philadelphia, pa: the fa center of excellence (coe) is a translational research and clinical care center devoted to friedreich ataxia: expediting basic science and drug discovery findings to new treatments and dedicating resources to clinical research and care to further understand the disease, inform drug development and improve outcomes for individuals living with fa. The center was established in march 2014, with a commitment to children's hospital of philadelphia/ penn medicine (university of pennsylvania), presented by fara in partnership with the hamilton and finneran families/ curefa foundation. Projects and investigators with continued funding included dr. Rob wilson- drug discovery, dr. David lynch- translational and clinical neuroscience research, dr. Ian blair- biomarker discovery, dr. Clementina mesaros- biomarker discovery, dr. Kim lin- cardiac research, and dr. Shana mccormack- metabolism and endocrinology. The coe established research infrastructure consisting of four core areas- neurology, cardiac, biomarker, and drug discovery. The center not only supports work within these disciplines but also fosters efficient collaboration and synergy across them. For example, 95% of individuals with fa have the same gene mutation, a gaa repeat expansion, however, 5% of individuals have non-gaa repeat mutations. Coe clinicians observed that individuals with certain non-gaa mutations have different clinical symptoms and disease progression (both more and less severe). These clinical observations sparked lab-based studies into how specific missense mutations may affect frataxin's function beyond its well-”

“Prior year grant refunds included in support on financial statements 91,718.”

“Fara's audit committee consists of the finance committee, ceo and one at-large board member. Each year the audit committee seeks the services of an outside accounting firm and contracts for a full audit, preparation of financial statements and filing of the 990. The audit committee is responsible for reviewing recommendations from the audit and proposing new policies and procedures as necessary. The audit committee also participates in detailed review of financial statements and 990 prior to sharing with the full board for a vote. All 990 information is verified for accuracy and completeness by fara's director of finance, fara's vp of fundraising and communications and fara's ceo. The verified draft is reviewed by the fara finance committee and submitted to the full fara board for review and approval prior to filing.”