Ron Bartek — Co‑founder and President of the Friedreich’s Ataxia Research Alliance (FARA), Ron brings personal experience as a father in the FA community, extensive advocacy leadership (including past Chairmanship of NORD), and service on NIH advisory councils and rare‑disease coalitions. Co-founder/President, Friedreich's Ataxia Research Alliance (FARA); BOD member, Critical Path Institute; Former Director & Chair, National Organization for Rare Disorders; past President and current member of BOD, Alliance for a Stronger FDA; co-founder and Chair of the BOD of the NCATS Alliance; co-founder and chair of steering committee, Pediatric Inclusion Alliance; former BOD, Alliance for Regenerative Medicine; Member, Institute for Gene Therapy Patient Advocacy Advisory Council; 4-year member NIH/NCATS National Advisory Council; former Co-Chair, NCATS Cures Acceleration Network Review Board; 4-year member, NIH Neurological Institute National Advisory Council; recognized by FDA Office of Orphan Product Development as one of “30 Heroes changing lives of rare disease patients”; former member, FDA/CTTI Patient Engagement Collaborative; former partner/president, government affairs firm (Mehl, Griffin & Bartek); twenty years in federal executive and legislative branches in defense, foreign policy and intelligence (six years on House Armed Services Committee staff; four years at U.S. State Department, one year on U.S. Delegation to Intermediate-Range Nuclear Forces Treaty negotiations w/Soviet Union, Geneva; six years as CIA analyst); after graduation, U.S. Military Academy, West Point, four years as Army officer, company commander in Korea and Infantry and Military Intelligence officer in Vietnam; MA/Russian Area Studies, Georgetown University.