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Happy Heart Week

Happy Heart Week is an annual awareness and fundraising drive for Barth syndrome celebrating Henry’s birthday. He is 6 years old May 2nd. Birthdays are always a big milestone, but in Henry’s case, birthdays are an extra sweet marker of life that we have not always been certain of. Help us celebrate Henry’s life, all of the other boys and men that have been and are affected by Barth syndrome, and their families and friends that  fight for them daily hoping for a treatment or cure. Thank you so very much!! 

Donate Now!

or donate by mail to Barth Syndrome Foundation, PO Box 419264, Boston, MA  02241-9264 (mail-in donation form).


In Celebration of Jon's 60th Birthday

Jon Ledecky has been a good friend of the Barth Syndrome Foundation (BSF) and one of its founding families from the beginning. His continuous support has helped BSF get to the point where we have begun human clinical trials of the first possible treatments for this often fatal disorder.  

In lieu of a big birthday celebration, Jon has decided instead to make a birthday gift to the Barth Syndrome Foundation. This cause is important to Jon and his family and he would welcome you making a donation of any size to this worthy cause. Barth Syndrome Foundation is participating this year in the "Hockey with a Heart" program that the New York Islanders promote at their home games. It is important to the Barth Syndrome Foundation to show participation by as many people as possible so the size of your gift is not nearly as important as your participation.

To encourage donations, a friend of Jon's will match all donations to the Barth Syndrome Foundation up to a total of $25,000.

Donate Now! 

or donate by mail to Barth Syndrome Foundation, PO Box 419264, Boston, MA  02241-9264 (mail-in donation form).


International Scientific, Medical & Family Conference

The Barth Syndrome Foundation Conference welcomes your support. We have opportunities for all budgets. For those seeking to support education, please consider our family sessions where leading experts explain the newest information on Barth syndrome. If you are interested in supporting science and medicine, we have many choices for you such as the scientific and medical session, the international scientific and medical advisory board breakfast, or the ever-popular poster session. You may also find sponsoring the expert consultations to be a rewarding selection, where families and clinicians share valuable information about clinical aspects of Barth syndrome.

Donate Now!

or donate by mail to Barth Syndrome Foundation, PO Box 419264, Boston, MA  02241-9264 (mail-in donation form).

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