What's New

With the completion of the 2017 Barth Syndrome Foundation (BSF) Research Grant Cycle, 16 annual award cycles have committed a total of US $4.5 million to this important effort through 104 research grants to 60 principal investigators around the world. As with all BSF grant cycles, the projects from the 2017 cycle that were accepted by BSF were actually awarded the following year, thus being included in 2018 fiscal year expenses. BSF, with the advice of its international Scientific and Medical Advisory Board, and with support from international affiliates, awarded four research projects. BSF is very happy to be able to support these grant recipients.

Steve McCurdy, the Co-Founder and Chairman of the Barth Syndrome Foundation, speaks with Shannon Hogan and explains what Barth Syndrome is.

A young Genesee County teen born with a rare genetic condition will be a special guest at an upcoming NHL game. Devin, a 13-year-old boy from Burton, was born with Barth syndrome. The genetic condition affects about 200 people worldwide. The disease causes an enlarged and weakened heart, muscle weakness, recurrent infections, and small stature, and frequently results in fatal infection or heart failure by age three. Devin underwent a successful heart transplant at 9-weeks-old.

The New York Islanders will host the Detroit Red Wings on Friday, Feb. 9 at their second "Barth Night" hosted by the New York Islanders, where hockey fans will learn about Barth syndrome and how they can help. Devin will get to ride the Zamboni and drop the ceremonial puck. He'll also be featured in a video shown on the scoreboard during the game.

"Devin absolutely LOVES hockey," said Nicole, Devin's mother. "He can't play due to his Barth syndrome, but he loves to watch and talk about hockey. This game is all he's talked about for weeks."

Devin's family and friends are hosting a watch party at Sharky's Sports Bar in Burton beginning at 6:30 p.m. Tickets are just $10 and include pizza and pop. Proceeds will go to the Barth Syndrome Foundation.

REGISTER NOW for BSF’s 9th International Scientific, Medical & Family Conference, "Power Up!," scheduled for July 16-21, 2018, in Clearwater Beach, Florida. This will again be the world's largest gathering of Barth syndrome researchers, clinicians and families.

ALL attendees must register with BSF.

This conference brings affected families, research scientists, and clinicians together in one place at one time for a dual track meeting. The Barth Syndrome Foundation and our affiliates in Canada, France, Italy, and the United Kingdom firmly believe that while each of these groups can make some progress in their individual efforts, together, we are so much more powerful.

Don't miss out on this important event. Follow the link to REGISTER NOW! The link to make hotel reservations is also on the page. Book early to secure your sleeping room!

We look forward to seeing everyone in July!

The Barth Syndrome Foundation is soliciting speaker abstracts for the Scientific and Medical Sessions of the 9th International Scientific, Medical & Family Conference on Barth Syndrome to be held on July 16-21, 2018 at the Hilton Clearwater Beach Resort, Clearwater Beach, Florida. The SciMed sessions will take place on Thursday and Friday, July 19th and 20th, and presentations should cover clinical and scientific areas directly related to Barth syndrome. Invited speakers will have ~ 30 minutes to present. The deadline for Speaker Abstract submission is March 1, 2018.

The Barth Syndrome Foundation 2018 Scientific and Medical Conference Organizing Committee (COC), comprised of members of the Barth Syndrome Foundation International Scientific & Medical Advisory Board, invites the submission of abstracts for poster presentations related to the scientific and/or clinical aspects of Barth syndrome. The deadline for Poster Abstract submission is May 15, 2018.

The Barth Syndrome Foundation offers a limited number of travel scholarships for qualifying physicians, clinical residents/ fellows/students, nurses, and other allied health professionals to help defray the cost of attending the 2018 Conference. This program is designed to encourage medical practitioners to increase their knowledge about and improve their care of Barth syndrome individuals. The deadline for Scholarship Application submission is May 15, 2018.

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