Barth Syndrome Foundation Names Katherine R. McCurdy as Chair to the Board

New BSF Board Chair brings a lifetime of leadership and service in life science and nonprofit sectors to organization, strengthening commitment to advance potential therapies for Barth syndrome.

Barth Syndrome Foundation (BSF) announced this week Katherine R. McCurdy, MBA (Kate) will assume the role of Chair of the Board of Directors effective April 1, 2020.

McCurdy succeeds Susan McCormack who has led BSF since 2018. During McCormack’s tenure, BSF has made significant strides in translational research and advocacy, most notably hosting an externally-led Patient-Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA) in 2018. In addition, BSF supported the launch of the first two clinical trials in Barth syndrome. “BSF is actively cultivating opportunities to progress from bench to bedside the research that we made possible over the last two decades,” said McCormack. “Kate is uniquely able to lead BSF in this next phase of our work to advance therapies for Barth syndrome.”

McCurdy adds the chair role for BSF to a long history of distinguished service in the life sciences and nonprofit sectors. As a Barth syndrome parent and a founding member of BSF, McCurdy has been unwavering in her commitment to scientific excellence, having created many of BSF’s science programs, including the Scientific, Medical and Advisory Board (SMAB), the research grant program and the International Scientific and Medical Conference. Furthermore, she has served on the SMAB for nearly 20 years and has been a vital contributor to many interdisciplinary efforts at the National Institutes of Health (NIH), including the Global Rare Disease Registry initiative, the NHLBI’s working group on pediatric cardiomyopathy, and the Collaboration, Education and Test Translation Program (CETT).

2020 marks a pivotal year for BSF as the organization celebrates its 20th anniversary and prepares for the 10th biennial International Scientific, Medical and Family conference to be held this summer in Florida. “Kate brings a track record of leadership and forward-looking vision that will aid BSF as we continue to evolve our scientific and therapeutic investment strategy to deliver a ‘new generation’ of life-changing therapies for Barth syndrome,” says Emily Milligan, BSF Executive Director.

McCurdy holds an MBA from Harvard Business School and was formerly an executive at PepsiCo. The background she brings to BSF’s leadership will be paramount as the organization navigates complex challenges to progress gene therapy and other therapeutic approaches: “We are closer today than we have ever been before to a treatment for Barth syndrome. However, advancing potential therapies will require significant additional investment, new approaches, new partners and the continuing patience and engagement of our community. Nonetheless, in just 20 years BSF has achieved what many thought was impossible by advancing the scientific and medical understanding of Barth syndrome. I am honored to continue to help drive this organization’s strategic efforts and am 100% committed to the shared vision to eradicate Barth syndrome.”

About Barth Syndrome Foundation (BSF) 
Barth Syndrome Foundation ( is the only global network of families, healthcare providers, and researchers solely driven by the mission to save lives through education, advances in treatment and finding a cure for Barth syndrome. BSF has funded nearly $4.9M USD since 2002 and catalyzed over $21M USD in funding from other agencies to advance global scientific discoveries to end the suffering and loss of life from Barth syndrome. Additionally, BSF provides a lifeline to families and individuals living with Barth syndrome around the world, offering individualized support, educational conferences, a robust patient registry and collaborations with specialist healthcare providers to define standards of care, treatment and rapid diagnosis.

About Barth syndrome 
Barth syndrome is a rare, life-threatening, genetic mitochondrial disorder primarily affecting boys. Affected individuals may suffer from heart failure, muscle weakness, and infection (caused by neutropenia). Additional characteristics of the syndrome commonly include growth delay, impaired lipid metabolism, extreme fatigue and cardiolipin deficiency. In some individuals affected by Barth syndrome, the symptoms can be very severe, sometimes resulting in heart transplant, potentially lethal infections, and all too frequently death.

Barth Syndrome Foundation Logo

Barth Syndrome Foundation Logo

We are closer today than we have ever been before to a treatment for Barth syndrome. Advancing potential therapies will require significant additional investment, new approaches, new partners and the continuing patience and engagement of our community