A Foundation Building Strength

Advancing Nemaline Myopathy research. Supporting our community. We are strong where it matters.

Resources & Support

Research

Our Impact

0 % of your donation is invested in Nemaline Myopathy research
0 research studies funded to date
0 + people with Nemaline Myopathy registered in CMDIR
SEE OUR IMPACT

Upcoming Events

  • May 1 – 31

    NEMALINE MYOPATHY AWARENESS MONTH

    May is Nemaline Myopathy Awareness Month, and A Foundation Building Strength is excited to celebrate all month long! We’re raising awareness for this rare muscle disorder…

    Friday, May 1, 2026 – Sunday, May 31, 2026 Online
  • May 9

    VIRTUAL KIDS GATHERING – AGES 12 & UNDER

    Join A Foundation Building Strength (AFBS) for a special virtual gathering designed just for kids ages 12 and under who are affected by Nemaline Myopathy (NM). Hosted by AFBS…

    Saturday, May 9, 2026 9:00 am – 10:30 am Online
  • May 31

    NEMALINE MYOPATHY AWARENESS DAY

    May is Nemaline Myopathy Awareness Month, and A Foundation Building Strength is excited to celebrate all month long! We’re raising awareness for this rare muscle disorder…

    Sunday, May 31, 2026 Online
View All Upcoming Events ›

Get Involved

We’d love to have you as part of our Nemaline Myopathy community! Check out the various way to get involved with AFBS, stay up-to-date, donate, and help us inspire others to join the cause.

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FOR OUR COMMUNITY

We are dedicated to our mission of finding treatments for Nemaline Myopathy, while providing support and resources to the Nemaline Myopathy community.

About Nemaline Myopathy
Who We Are
Advance Research

You Can Make A Difference

Nemaline Myopathy (NM) is a rare muscle disease that affects all the skeletal muscles in the body, causing muscle weakness.

NM varies greatly in severity, from mild symptoms to premature mortality. It does not affect brain development or cognitive function. Currently no Nemaline Myopathy treatments or disease modifying therapies exist, but A Foundation Building Strength is working aggressively to change this.

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On the Blog

Strengthening Connections & Advancing Science: AFBS at the 2026 MDA Clinical & Scientific Conference
News

Strengthening Connections & Advancing Science: AFBS at the 2026 MDA Clinical & Scientific Conference

Last month, Orlando became the epicenter of neuromuscular research as nearly 2,000 clinicians, researchers, and advocates gathered for the 2026 MDA Clinical & Scientific Conference. For A Foundation Building Strength (AFBS), this trip marked a major milestone: our first time attending as a formal patient advocacy organization. Represented by Executive Director Jen Tozer, Founder Marc…

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Faces of NM: Ella’s Story and the Path Toward Treatment
Community Spotlights

Faces of NM: Ella’s Story and the Path Toward Treatment

At nine months old, Ella is defined by two distinct realities. To her parents, Erin and Paul, she is a sharp, observant infant with bright blue eyes and a smile that anchors their world. She mimics adult behaviors and is already beginning to learn early sign language with her mother. To the medical world, however,…

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