The Barth Syndrome Foundation (BSF) is delighted to welcome Laura Duvelius as their new Senior

Laura Duvelius

Development Officer. As a seasoned nonprofit leader with over 25 years of experience, Laura brings a deep commitment to rare disease communities and a proven track record of securing transformational gifts, building strong donor relationships, and driving strategic growth.

Laura has dedicated her career to advancing mission-driven organizations, most recently serving as Executive Director of Development at the Amyloidosis Research Consortium. There, she led a team that significantly increased revenue, secured multimillion-dollar gifts, and launched a research endowment to support long-term sustainability. Her passion for science, research, and patient advocacy is matched by her ability to align philanthropic strategies with institutional goals.

Laura brings extensive experience in leading successful fundraising initiatives across diverse organizations. She has secured six- and seven-figure gifts from high-net-worth individuals, foundations, and corporate partners. Her background includes leadership roles at Ivymount Foundation, Paths for Families, and Easter Seals, where she directed an $8 million campaign and significantly expanded both government and corporate support.

In her new role as Senior Development Officer, Laura will lead BSF’s development strategy, major gifts program, and philanthropic partnerships. She will collaborate closely with BSF’s leadership, board, families and scientific community to grow support for its vital work in advancing research, supporting families, and accelerating treatment development for Barth syndrome.

About Barth Syndrome Foundation

Barth Syndrome Foundation is the only world-wide organization dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome. The organization began in 2000, after the first international conference held in Baltimore, MD (USA) where families from around the world first gathered to discuss BTHS. The families made a unanimous decision to form BSF and work together to find treatments and a cure for this often fatal multi-system disorder while supporting each other through their journey. The Foundation strives to accelerate progress through collaboration between families, physicians, scientists and donors. BSF actively encourages family participation in advocacy and research in the US and among its international affiliates.

More information about Barth Syndrome Foundation can be found here: https://www.barthsyndrome.org/