Barth syndrome (BTHS) is a life-threatening, genetic, multi-system disorder affecting almost exclusively boys and young men worldwide. The Barth Syndrome Foundation (BSF), in conjunction with our international affiliates, is the only worldwide organization dedicated to Barth syndrome. Since its founding in 2000, BSF has grown quickly into a leader among rare disorder foundations in the world. It operates the following:
- a multi-million-dollar research grant program
- a medical database and biorepository, a human TAZ gene (responsible for BTHS) variants database, and various other research resources
- a biennial international conference for scientists, doctors, patients, and families
- family and physician internet listservs
- a dynamic and comprehensive website
- educational monographs and pamphlets
- twice yearly printed newsletters
- regular regional outreach meetings and physician awareness programs
BSF has a world-class Scientific and Medical Advisory Board and has awarded research grants totaling over $4.2 million to 58 investigators around the globe since 2002. BSF has over $3.5 million in net assets available for program investment and a 2017 budget of over $1 million. Four affiliates are now in place in Canada, the UK, France and Italy. Currently, approximately 210 affected living individuals have been identified.
BSF strives to accelerate progress towards finding treatments and a cure for BTHS, and significant scientific and medical advances have been made.
Importantly, the first clinical trial for a Barth-specific treatment is now under way at Johns Hopkins, and several additional trials are in planning stages. Appropriate support for these trials is a major focus for the organization and its constituency now.
MISSION, GOALS & VALUES:
Our Mission: Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.
- To ensure that everyone with Barth syndrome is quickly and accurately diagnosed.
- To encourage, guide, and fund additional research into, and ultimately to develop a cure for, Barth syndrome.
- To ensure that all diagnosed families know about and can actively participate in BSF’s activities and clinical research.
- To communicate information about effective care of and treatments for Barth syndrome patients to attending physicians.
- To grow and strengthen our caring and informed community of Barth families.
- To build the expanding base of committed contributors who will provide the funds we need to achieve our vision.
- To inspire, support, and be good stewards of the time and talents of the growing number of volunteers and staff dedicated to our vision.
- We will ensure that BSF means: Credibility, Integrity, Professionalism, and Compassion.
- We value collaboration and constantly seek to improve by listening to and learning from others.
- When representing BSF, we place the interests of all those affected by Barth syndrome above the interest of any individual.
- We are steadfast in our focus on our mission, and we will never ever give up!
The Executive Director will lead our virtual organization and will:
- Ensure a robust and growing revenue/donation stream.
- Develop, direct, and evaluate science and research programs, family services programs, the BSF International Conference, communications, the biorepository and registry, affiliate coordination, and volunteer development.
- Conduct goal setting, planning, and implementation and evaluation of all operations in conjunction with the Board of Directors.
- Maintain a close working relationship with the Executive Committee and the Board to whom she/he is responsible.
- Encourage and promote growth in the organization by serving as a visionary leader for the staff and volunteers.
- Oversee the preparation of financial reports, implement financial policies, and ensure fiscal soundness in accordance with Board direction.