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#GivingTuesday 2018

After Thanksgiving, Black Friday, Small Business Saturday, and Cyber Monday, we have #GivingTuesday, a global day dedicated to giving back. On Tuesday, November 27, 2018, people from around the world will come together for one common purpose: to celebrate generosity and to give.

Thanks to you, BSF is not only funding research for a cure but is also tirelessly supporting and advocating for individuals and families who suffer from Barth syndrome. 

Every year, BSF embraces new families from around the globe, providing support, educational programs, and awareness, while serving as the collective patient voice. We are relentless in our efforts to support every affected individual from diagnosis throughout their lifetime, and to honor the memory of those we have loved and lost by strategically working toward life-saving therapies.

Your support on Giving Tuesday and throughout the year makes this possible!

We hope you’ll join this global movement to raise money and awareness for Barth syndrome.

Donate Now!

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

We couldn’t do this without you!
#POWERUPBSF


Wally's Warriors

Our goal for this fundraiser is to sell as many t-shirts and sweatshirts as we can to raise money for the Barth Syndrome Foundation in honor of our boys, Henry and Wally. The fundraiser will last for two weeks! Everyone has two weeks to order their Wally gear and shirts and sweatshirts bought will approximately arrive on December 10th! On December 11th and that whole week, (Wally's Birthday and Birthday week) we ask that everyone take a selfie wearing their shirt or sweatshirt and post it to social media using the hashtags #PowerUpBSF and #wallyswarriors to help bring awareness to Barth syndrome!

In 2015, we had a baby boy named Henry who passed away unexpectedly after birth due to heart failure that we were unaware of. We never had answers for why this occurred or what caused our sweet Henry’s heart to fail until his brother, Wally, was born and hospitalized at two months of age. Our sweet Walter was perfect just like his big brother. But in February of 2018, Wally contracted RSV and was hospitalized. It was during that hospital stay that we were devastated to learn that Wally and most likely Henry suffer/ed from a rare genetic disease called Barth syndrome.

Donate Now!

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


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).


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