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Strategic Plan

Our Mission, Strategic Priorities, and Our Goals

Our Mission

The MSUD Family Support Group provides support, personal contact, encouragement, knowledge, and hope for those affected by MSUD. The group unites the MSUD families, medical clinicians, and researchers into a community seeking to improve the lives of individuals with MSUD through day to day support, improved treatments, and the search for a potential cure for MSUD.

Download our comprehensive strategic plan document to learn more about our detailed goals, timelines, and implementation strategies for 2026-2029. 

Download Strategic Plan

Strategic Priorities and Goals

Empower the MSUD Community

Goal 1: 

Empower individuals and families to become effective advocates.

  • Offer training sessions and webinars to strengthen advocacy initiatives
  • Develop and distribute educational materials, including talking points, for MSUD advocates and ambassadors
  • Encourage strategic partnerships and community building among individuals, families, researchers, and professionals in the MSUD and rare disease community
  • Monitor legislation and policy developments to ensure the community remains informed and engaged

Promote Research

Goal 2:

Advance research efforts to improve MSUD treatment and care.

  • Encourage participation from the MSUD community in the patient registry
  • Publish findings from the MSUD Patient Registry and promote the use of the patient registry to known researchers in relevant fields
  • Utilize the Scientific Advisory Board and Clinical Advisors to evaluate and share advancements in MSUD research and treatment
  • Host a full-day, in-person Scientific Advisory Board biennial meeting to share advances in research
  • Organize educational sessions and webinars, including the biennial symposium, to share current research and support individuals, families, and professionals in the MSUD community

Financial Sustainability

Goal 3: 

Strengthen fundraising efforts and diversify revenue streams.

  • Develop and implement a comprehensive fundraising strategy that includes individual giving, corporate sponsorships, and grants
  • Create new opportunities for donor engagement through events, campaigns, and recognition programs
  • Explore innovative revenue streams, such as planned giving, merchandise sales, and partnerships with industry stakeholders
  • Build an endowment fund to ensure long-term financial stability

Organizational Development

Goal 4: 

Enhance leadership.

  • Create a pipeline for the board and committee positions
  • Offer leadership training to enhance knowledge and skills in governance and advocacy
  • Develop a mentorship program, the MSUD Ambassadors, to connect new and experienced volunteers
  • Promote the work of volunteers to celebrate and share their contributions with the MSUD community