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Mission, Vision, Goals & Values

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!

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