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1st Annual Power Up Virtual Campaign

June 11-13, 2018

In an effort to help offset the cost of our Scientific, Medical & Family Conference in July and raise ever important awareness, the BSF community is coming together for three days for the 1st Annual Power Up Campaign to support our vision, “A world in which Barth syndrome no longer causes suffering or loss of life." Thank you for taking the time to educate yourself and others, and for making a generous donation to help bring our vision to reality. Our families are so very grateful!

Donate Now!

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


Connor's Crew

When you join Connor’s Crew, you are joining a fundraiser for the life threatening disease, Barth syndrome. We're all busy, so we have set up a virtual fundraising event that will allow everyone to participate by doing what they would be already doing! Here's how it works: Sign up, choose your activity and donate to the Barth Syndrome Foundation. Then we will all do something active on June 30th and post our pictures, videos and posts to social media to help spread awareness for Barth syndrome. #connorscrew

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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