About the Barth Syndrome Foundation (BSF)
We are the only world-wide volunteer organization dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS). We started in 2000, after the first international conference held in Baltimore, MD (USA) where families from around the world met to discuss BTHS. As a result, we made a unanimous decision to work together to find a cure for this multi-system disorder. Our Foundation strives to accelerate progress through collaboration between families and scientists. We encourage family participation in research. Also, we provide several ways to keep up-to-date about advances in science and medicine.
Science & Research
Since January 2003, we have been actively funding approved research into BTHS. Grants have been provided to investigators around the world and have supported work on the underlying biochemistry and genetics of the disorder as well as the creation of animal models, collection of phenotypic data, and insights into disease mechanisms. All applications are reviewed by our world leading Scientific and Medical Advisory Board consisting of experts in various fields relevant to Barth syndrome.
For more information see Research Grant Program.
Contact: Melissa Huang, PhD, Research Associate
Toll Free: 855-662-2784 or 855-NO-BARTH
Email: melissa.huang@barthsyndrome.org
Family Services
BSF Family Services provides a caring community that will offer each Barth family information, guidance and emotional support. We are dedicated to education, advancing treatments, and finding a cure for Barth syndrome. We are here to help, and you can contact us at any time. We know from our own experience what a difference this can make to each affected family. Our desire is that you will realize the impact BSF can have in your family.
Contact: Shelley Bowen, Director, Family Services & Advocacy
Toll Free: 855-662-2784 or 855-NO-BARTH
Local Line: 914-303-6323
Education
Our principal education event is our biennial international scientific, medical and family conference, which brings together the largest number of individuals interested in Barth syndrome. Our Family Services team is continually developing new informational resources in response to the needs of families, individuals, and professionals working with those affected by Barth syndrome.
Contact: Shelley Bowen, Director, Family Services & Advocacy
Toll Free: 855-662-2784 or 855-NO-BARTH
Local Line: 914-303-6323
Awareness
We work continuously to raise public awareness and generate additional support among individuals, community organizations of similitude, and the medical community. Up-to-date information on Barth syndrome-- from medical issues to daily living issues — is available on-line. We also provide print publications and video coverage of our international scientific, medical and family conferences, and through our website we communicate globally.
Contact: Shelley Bowen, Director, Family Services & Advocacy
Toll Free: 855-662-2784 or 855-NO-BARTH
Local Line: 914-303-6323
