What's New

BSF is pleased to announce that the agenda for the Family Sessions of the 9th International Scientific, Medical & Family Conference is now available online.

BSF is pleased to announce that the agenda for the Science & Medicine Sessions of the 9th International Scientific, Medical & Family Conference is now available online.

In BSF's 2017 Annual Report, you will find the myriad ways in which your donations benefit Barth syndrome patients and families throughout the world.

In 2017, BSF reached a milestone when we awarded our 100th research grant. To date, the Foundation has awarded grants totaling $4.5 million. This dollar amount, however, pales in comparison to the volume of follow-on funding that has been generated from our “seed donations.” For example, on page 7, you will read that Dr. William Pu was recently awarded an R01 grant from the National Heart, Lung, and Blood Institute that effectively quintupled BSF’s initial donation for his research.

The year 2017 marked the Barth syndrome community’s entrance into the realm of clinical trials. In April, BSF began involvement in its first pharmaceutical clinical trial, called TAZPOWER. This trial, for the compound Elamipretide, is expected to be completed within the next year. A second clinical trial – the CARDIOMAN study for the pharmaceutical Bezafibrate – is anticipated to begin in the United Kingdom soon (see page 6).

Shelley Bowen’s tireless efforts to spread awareness and to educate Barth syndrome

The deadline for Poster abstract submissions to the 9th International Scientific, Medical & Family Conference on Barth Syndrome is May 15, 2018. Scholarship applications and Poster travel stipend applications are also due on May 15, 2018. If you are interested in attending, please contact Matthew Toth, PhD, BSF Science Director (matthew.toth@barthsyndrome.org) for more information. Please remember that four poster presenters will be chosen to speak at the Friday sessions of SciMed.

The following is a summary of a live presentation offered to the Barth syndrome patient and family community on March 21, 2018. Stealth BioTherapeutics’ CEO Reenie McCarthy and Chief Clinical Development Officer Jim Carr, Pharm.D., presented an update on Stealth’s clinical trials in mitochondrial disorders and Barth syndrome and answered questions from the community.

This summary and the content within is provided for reference purposes and for the intended audience only. Such reproductions and copies are authorized only when provided directly to the intended audience recipient by Stealth. This summary and the content within does not intend to provide or substitute for medical advice. Please seek the advice of your physician about treatments which may be appropriate for you or your family member.


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