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Get Involved

Join us in building a supportive community for GNE Myopathy families worldwide

Be Part of Our Founding Story

As a new organization, every person who joins us now becomes part of our foundation. Your involvement today will shape how we serve the GNE Myopathy community for years to come.

Ways to Get Involved Right Now

Share Your Experience

Help us understand what the GNE Myopathy community needs most by sharing your story, challenges, and insights.

Spread Awareness

Help us reach more families by sharing Hope for GNEM with your network, healthcare providers, and social media.

Join Our Updates

Be the first to know about our progress, new resources, community events, and volunteer opportunities.

Share Ideas & Feedback

Help shape our programs and resources by sharing ideas about what would be most helpful for the community.

Professional Volunteers & Expertise

We're actively seeking professionals who can help us build our programs and reach more families:

Healthcare & Research

  • • Neurologists and neuromuscular specialists
  • • Physical and occupational therapists
  • • Genetic counselors
  • • Medical researchers

Operations & Outreach

  • • Non-profit management experience
  • • Community outreach coordinators
  • • Grant writers and fundraising
  • • Web developers and designers

Coming Soon (2025)

Donation Platform

Once our 501(c)(3) status is approved, we'll launch secure donation systems to fund research and support programs.

Community Programs

Support groups, educational webinars, and family connection programs are in development.

Questions About Getting Involved?

We'd love to hear from you and learn about your interests, skills, and how you'd like to contribute to our mission.