Co-founder/President, Friedreich’s Ataxia Research Alliance; Former Director & Chair, National Organization for Rare Disorders; past President of BOD, Alliance for a Stronger FDA; former BOD, Alliance for Regenerative Medicine; 4-year member NIH/NCATS National Advisory Council; former Chair, NCATS Cures Acceleration Network Review Board; ; 4-year member, NIH Neurological Institute National Advisory Council; recognized by FDA Office of Orphan Drug 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; 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 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.