Who Are We?


The MSUD Family Support Group is a non-profit volunteer-run organization serving families and professionals worldwide. Founded in 1982 when a group of families gathered together for mutual support and shared information, our organization continues to grow and develop resources to meet our goals of support, education, expanded research, and advocacy.

The MSUD Family Support Group, a non-profit organization, now includes families and professionals worldwide. It is a growing organization and continues to develop resources to meet its goals of support, education and advocacy.

From an organization perspective, we are organized as follow:

Executive Director

The MSUD Family Support Group’s Executive Director takes the lead in executing the mission of the MSUD Family Support Group. The Executive Director reports to an Executive Committee of the Board of Directors and has overall strategic and operational responsibility for programming and activities related to improving the lives of those with MSUD and their families. the Executive Director has knowledge of rare diseases, core programs, operations, and business plans. The Executive Director builds and provides guidance to a team of volunteers and contractors to facilitate fulfillment of the mission of the Family Support Group.

Board of Directors

Governance over the activities of the MSUD Family Support Group is provided by its Board Of Directors. Each member of the Board is the parent of a MSUD patient or is a MSUD patient themselves.

The Board of Directors consists of seven members and includes a President, Vice President, Treasurer, Secretary, and three members. Aside from the commonality of having a MSUD family member, the board seeks to have a broad range of business skills and backgrounds.

Science Advisory Board

Promoting research directed at advancing treatments and discovering a cure is a primary goal of the MSUD Family Support Group.

The mission of MSUD Scientific Advisory Board (SAB) is to provide scientific expertise and guidance for the future MSUD research portfolio. The Science Advisory Board assists the MSUD Family Support Group to develop a research strategy, prioritize research projects, and evaluate research proposals from scientists requesting funding.

Medical and Nutritional Advisors

Description Forthcoming

Newsletter Co-Editors

The Co-Editors prepare the semi-annual newsletters.

Spanish Speaking Volunteers

Please join the Spanish speaking MSUD Family Support Group.

The MSUD Family Support Group is Volunteer Led and Professionally Managed

The MSUD Family Support Group is a tax exempt 501(c)3 organization. We are 100% volunteer run and funded almost entirely by donations.

Join our email list to receive copies of our semi-annual newsletter. Families with newly diagnosed MSUD children can call any of the members of the Board of Directors (see “Contacts”) to learn more about MSUD and the MSUD Family Support Group. Your generous donations will help us meet the needs of our community. Volunteers are always needed. Click here if you’d like to help.