10th Barth Syndrome Foundation Conference 1 Year Away

Collaboration and Community are Building Blocks of Biannual BSF Conference

(July 20, 2019 Larchmont, NY) Every two years, Barth Syndrome Foundation (BSF) holds an international conference targeted to families, scientists, clinicians and collaborators who either live with or study the rare mitochondrial disorder Barth syndrome (BTHS). Barth syndrome is caused by a defect in the tafazzin (TAZ) gene and overwhelmingly affects boys. Most often apparent within the first year or two of life, Barth syndrome is frequently fatal and associated with heart defects and/or heart failure, low white blood cell counts, poor growth, muscle weakness and shortened life expectancy.

BSF began the first conference 20 years ago at a time when most families caring for children with the condition were being advised that they were “the only ones” with the rare disorder. Defined by and named after Dr. Peter Barth of the Netherlands, Barth syndrome and BSF were little more than words on paper and passionate intentions of parents and doctors back in 2000. Today, the Barth syndrome community is global and the conference attendees represent more than 12 countries, 228 family members, and nearly 100 scientists and clinicians. At the last conference, 375 attendees gathered in Clearwater, Florida to participate not only in the conference but also in a landmark Patient Focused Drug Development Meeting, the first off-site meeting of its kind attended by U.S. Food and Drug Administration (FDA) in an effort to provide a voice to the patient experience. In addition, 5 research studies were conducted on-site, allowing researchers and clinicians to gather important biometric and biomedical information from patients with the very rare disease.

Celebrating the 20th anniversary of the organization and coinciding with the year 2020, BSF is launching a new decade of research for Barth syndrome with the theme “For a new GENEration”. While exciting, the new theme and opportunity to celebrate 20 years of organizational growth and success in the coming year is not all BSF has to offer.

“The bi-annual BSF conference is literally a global community and collaboration,” says Shelley Bowen, director of Family Services and one of the original organizers. “This meeting is so much more than a meeting. It is the lifeline of our families that creates a deep and enduring connection that is sustained despite geographic boundaries during the year. This event facilitates research, cultivates collaborations, strengthens bonds and gives all the fire in the belly infusion we need to propel our mission, to find a cure for Barth syndrome.”

Dr. Carolyn Taylor from Medical University of South Carolina (MUSC) Department of Pediatric Cardiology appreciates the multifaceted approach to the meeting. “As a physician, I recognize the value that this conference brings to families. It is the unique collaboration that takes place here between researchers, affected individuals and clinicians that will facilitate the discovery of viable treatments for Barth syndrome,” she says.

The BSF International Conference will take place July 20-26, 2020 at the Hilton Clearwater Beach Hotel in Clearwater, Florida. Registration will open by early Fall; more information about the conference may be found at www.barthsyndrome.org/conference.