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.
Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.
A world in which Barth syndrome no longer causes suffering or loss of life.
- 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.
- 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!