Florence Mannes

The Barth Syndrome Foundation, Inc. is a non-profit organization that focuses on Barth Syndrome, an ultra-rare genetic condition that primarily affects males. The private company is based in Larchmont, NY and was founded in 2000 by Katherine R. McCurdy. The condition is characterized by cardiac abnormalities, exercise intolerance, muscle weakness, severe fatigue, recurrent infections, and delayed growth. The foundation aims to raise awareness about the condition and fund research to find a cure. There are currently no FDA- or EMA-approved therapies for patients with Barth Syndrome.