lgmd2c patient community board

Connect. Fundraise. Advocate. Raise awareness.

Join our community today!

INTRODUCING:

Patient Community Board — Founding Families


Helping shape the future of the global LGMD2C community


In January 2026, The Dion Foundation will launch its Patient Community Board — a global, non-governing engagement program designed to connect families, amplify patient voices, and strengthen advocacy and research readiness for LGMD2C.

Before opening this program more broadly, we are inviting a small group of Founding Families to help pilot and thoughtfully shape the initiative during its earliest phase.

🌎 WHAT IT MEANS TO BE A FOUNDING FAMILY


What Is a Founding Family?

Founding Families are patients, parents, or caregivers who:

  • Want to help shape a new community initiative

  • Are willing to offer feedback during the pilot phase

  • Believe in connection, transparency, and shared mission

Participation is optional, flexible, and non-governing.

🌎 WHAT PARTICIPATION LOOKS LIKE


What Participation Includes

January–March 2026 Pilot Phase:

  • Access to a private, moderated online community

  • Participation in one pilot community call

  • Opportunities to share feedback on:

    • Community structure and guidelines

    • Advocacy and storytelling initiatives

    • Engagement and fundraising tools

There is no requirement to fundraise, post publicly, or take on formal responsibilities.

🌎 WHAT THIS IS — AND IS NOT

This IS:

  • A community-building opportunity

  • A way to stay informed and connected

  • A chance to help guide future engagement

This is NOT:

  • A governing board

  • A medical advisory group

  • A clinical trial pathway

  • A guarantee of future participation

🌎 TIMELINE

JANUARY 2026

  • Identify and invite Founding Families

  • Finalize community guidelines

FEBRUARY-MARCH 2026

  • Launch Founding Family cohort

  • Pilot community call

  • Refine program structure

Q2 2026

  • First public Quarterly Town Hall

  • Expanded community engagement

🌎 CALL TO ACTION


Interested in Learning More?

If becoming a Founding Family feels aligned for you, we invite you to share your interest below.


Patient Community Board application form BELOW

DISCLAIMER

Participation in the Patient Community Board does not provide medical advice, influence clinical trial access, or confer governance authority within The Dion Foundation.

Let's Work Together

Thank you for your interest in The Dion Foundation’s Patient Community Board.

We’re deeply grateful for families who want to help strengthen the LGMD2C community through connection, advocacy, storytelling, and shared mission.

What happens next:

  • Our team will review submissions on a rolling basis

  • A small founding cohort will be invited to participate beginning January 2026

  • Participation is optional, non-governing, and separate from any clinical trial decisions

If selected for the founding phase, you’ll receive additional details about timing, expectations, and next steps. If not selected for the initial cohort, there will be future opportunities to engage as the program grows.

Thank you again for your willingness to be involved. Your voice matters.

With appreciation,
The Dion Foundation Team
🌐 www.thedionfund.org