Barth Syndrome Foundation
Barth syndrome is a rare, genetic, multi-system, disorder affecting boys and young men worldwide. Common symptoms include: cardiomyopathy (enlarged heart), neutropenia (a deficient white blood cell count), debilitating muscle weakness, delayed growth, and digestive disorders. No longer an inevitably fatal disorder, Barth syndrome is still a life-threatening and debilitating disease.
Since its founding in 2000, Barth Syndrome Foundation (BSF) has achieved extraordinary results and grown quickly into a leader among rare disorder foundations in the world. BSF reached its first five year goals in every category within only three years. The organization has almost $4 million in net assets available for program investment and a 2013 budget of just under $1 million. Four affiliates are now in place in Canada, France, the UK and Italy, all working closely with BSF.
Currently, fewer than 200 affected families have been identified. Extended families and friends of affected individuals form the core of this dedicated, highly motivated group of volunteers, who are driven to action by the serious consequences of this disorder.
As a member of the highly-regarded Genetic Alliance and the National Health Council, BSF has a successful record of fundraising/financial management, and meets the standards of the Better Business Bureau. BSF's Scientific and Medical Advisory Board is comprised of some of the most eminent and respected physicians and researchers in their fields.