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Levi's Genes

Our mission in Levi's Genes is to help raise awareness and raise money for Barth Syndrome Foundation. Without this foundation and our Barth syndrome families, I don't know where we'd be without them. They are all so important to us and to Levi. 

We're all busy, so we have set up a virtual fundraiser event that will allow everyone to participate whether that be donating here or by buy some Levi's Genes swag to ultimately raise money for the Barth Syndrome Foundation and spread awareness of Barth syndrome in our community. #levisgenes

Donate Now!

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


Westchester Triathlon ~ Team Will

September 23, 2018

The kids are back at school, the air’s getting a little cooler (though today feels like summer again!), and, once again, I’m training for the Westchester Triathlon. It’s coming up soon...on Sept 23rd! As many of you know, for the past 12 years I’ve competed in triathlons as part of Team Will to raise money for the Barth Syndrome Foundation (BSF). This race will mark my 4th year racing in memory of Will McCurdy, rather than in his honor. 

Will’s passing has motivated me to try to raise even more funds to help find a cure for this dreadful disease. Huge thanks to those of you who have generously supported BSF in the past. Your donations help…a lot! BSF has hit impressive milestones - they’re currently working closely with the FDA to help the FDA understand the disease state and treatment needs from the patient perspective. Yet they really need our support to drive this progress forward.  

Please help me honor Will’s memory by supporting a special fund that my friends Steve and Kate established after their son Will’s passing.

Thank you in advance for your consideration and generosity. Together, we can find a cure for Barth syndrome. 

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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