Our Leadership Structure

Executive Director

Leading Our Mission Forward

The MSUD Family Support Group’s Executive Director takes the lead in executing our mission. Reporting to an Executive Committee of the Board of Directors, the Executive Director has overall strategic and operational responsibility for:

• Programming and activities to improve lives of those with MSUD and their families
• Knowledge of rare diseases, core programs, operations, and business plans
• Building and guiding a team of volunteers and contractors
• Facilitating fulfillment of our mission

Governance with Personal Understanding

Governance over our activities is provided by our Board of Directors. Each member is either the parent of a MSUD patient or is a MSUD patient themselves.

Board Composition:

• 7 total members
• President
• Vice President
• Treasurer
• Secretary
• 3 additional board members

Beyond their personal connection to MSUD, the board seeks members with a broad range of business skills and backgrounds.

Advancing Research & Discovery

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

MSUD Scientific Advisory Board  (SAB) Mission: To provide scientific expertise and guidance for the future MSUD research portfolio.

The Science Advisory Board helps us:

• Develop research strategy
• Prioritize research projects
• Evaluate research proposals from scientists requesting funding

Medical and Nutritional Advisors

Expert Clinical Guidance

The MSUD Family Support Group is guided by expert medical and nutritional advisors who provide trusted clinical guidance, ensure accurate information, and support individuals and families living with MSUD.

Newsletter Editor

Keeping Our Community Connected

Our volunteer Editor, who is living with MSUD, prepares our semi-annual newsletters to help individuals and families stay informed and connected.

Spanish Speaking Volunteers

Serving Our Diverse Community

We welcome Spanish-speaking families! Please join the Spanish-speaking MSUD Family Support Group.

How We Operate

Volunteer Led & 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.