Friedreichs Ataxia Research Alliance Fara

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

“All new and existing board members required to annually complete a conflict of interest statement”

“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 and executive director.”

“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.”

“The organization is also registered to solicit contributions in the states listed.”

“Clinical outcome measures : functional performance tests (e.g., timed pegboard or walk tests, vision, hearing or speech tests) that quantify how much change takes place in a specific amount of time and are used in clinical trials to measure whether a drug is altering the course of the disease. Biomarkers: anything that can be used as an indicator of a particular disease state - usually proteins, enzymes, genetic variants, imaging (mri, ct or pet scans). Biomarkers can be used to assess risk of disease, diagnosis, or outcomes. Use of biomarkers in drug development is of great interest because biomarkers can provide evidence of biological activity, potentially demonstrating therapeutic benefit more quickly than traditional outcome measures. Biorepository: a repository or bank of stored biological materials such as blood samples, dna, organs, and tissues (such as skin, muscle, heart) that can be used for research. Through the ccrn in fa we have collected ten years of natural history data (ongoing) in more than 700 individuals with fa, validated clinical outcome measures and the fars scale, studied speech, vision and hearing, launched biomarker studies, established dna and rna repositories, and provided many blood samples to researchers around the world. The ccrn in fa investigators have been involved in multiple clinical trials including a few that were designed and conducted solely through network sites. Fara contributed more than $550,000 in 2013 to clinical research infrastructure in direct funding to the ccrn in fa centers and related clinical research activities. Titles and summaries of most of the projects presently funded by fara are available at: www.curefa.org/rpmp/public/pggrantlist.aspx and complete listings of grants awarded by year can be accessed at: www.curefa.org/grants-awarded.html”

“Fara's audit committee consists of the executive committee, executive director 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. Fara's board of directors receives the financial statements and 990 for review and votes to approve prior to public filing.”