Our Work Includes

Working together we are making a difference in the lives of children and their families. One day there will be a cure; we hope you will help us make that day come sooner.

• Raising awareness among physicians, scientists, and the general public;
• Supporting relevant research through an international grant research program;
• Providing a caring and educational community for affected families; and
• Hosting a unique information resource.

Our Mission

Saving lives through education, advances in treatments, and finding a cure for Barth syndrome.

Our Vision

A world in which Barth syndrome no longer causes suffering or loss of life.

Our Goals

• To ensure that everyone with Barth syndrome is quickly and accurately diagnosed.
• To ensure that all diagnosed families actively participate in the Barth Syndrome Registry and Repository.
• To encourage, guide, and fund additional research to improve understanding, diagnosis, and treatment, and ultimately to develop a cure for Barth syndrome.
• To communicate information about effective treatments of Barth syndrome to all attending physicians.
• To grow and strengthen our caring and informed community of Barth families actively involved in supporting each other and our organization.
• 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.

Our Values

• We ensure that BSF stands for: Credibility, Integrity, Inclusion, Professionalism, and Compassion. 
• We are respectful of the time and talents we are offered and are good stewards of the resources we are given. 
• We value collaboration and constantly seek to improve by listening to and learning from others. 
• We encourage diversity within our Board and committees, and strive to be inclusive in all program areas.
• We recognize the unique and personal challenges of every person and family affected by Barth Syndrome and pledge to them our commitment, compassion and respect.
• When representing BSF we place the interests of all those affected by Barth syndrome above the interest of any one individual.
• We will never ever give up until a cure and effective treatments have been made available to all individuals affected by Barth syndrome!