Comment on FR Doc # E8-24194

Barth Syndrome is a rare, profoundly debilitating and frequently fatal genetic disease. Barth syndrome occurs primarily in males across many different ethnic groups and does not appear to be more common in any one group. Because Barth syndrome is a multi-system metabolic disorder linked with cardiomyopathy, neutropenia, muscle weakness, exercise intolerance, cardiolipin abnormalities, and growth delay, increasing awareness of the disorder as well as both the clinical and genetic diagnosis of the disorder is critical to the development of treatment protocols and the ongoing search for a cure. Attached is testimony that BSF president, Valerie Bowen gave to the SSA. Thank you.