The Barth Syndrome Foundation's Board of Directors is responsible for overseeing the mission and purpose of the organization. Its duties include participation in strategic planning and making policy decisions, then securing the financing of them and the monitoring of their execution. Members must be willing to attend the requisite meetings, follow through on commitments, and participate fully in the decision-making process. The board also presents the organization´s image to the community and solicits its support in achieving BSF´s goals. Members of the BSF Board of Directors serve three-year terms. For all correspondence, including information, please contact us.
Peter van Loo
Peter received his BTHS diagnosis in 1989 at the age of two. Residing in the Netherlands, Peter is part of the family on which Dr. Peter Barth based his first article describing what is now called Barth syndrome. Peter is the 21st member of his extended family to have the disease and the first to live past his 5th birthday.
After spending the first three years of his education in a school for physically handicapped children, Peter finished primary school at a Jena Plan school. He then went on to study at secondary schools, persevering and completing coursework with some added time needed, due to BTHS-related exhaustion and illness. He initiated higher education to study computer science and has gone on to specialize in the online gaming industry.
Within BSF, Peter is a member of the Board of Directors. He also is the Chair of a committee uniquely comprised of affected individuals to ensure critical input and perspective into the direction and operations of BSF. In addition, he acts as the contact person and translator for Dutch speaking families and was one of the presenters during the BSF Patient Focused Drug Development meeting in 2018. Peter also regularly participates in and advocates for BSF-community engagement in various clinical studies.
