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 18 – 31

    NM AWARENESS SHARE-A-THON

    The NM Awareness Share-A-Thon is an online fundraising event designed to spread awareness about the rare neuromuscular disease Nemaline Myopathy across social media, while simultaneously…

    Monday, May 18, 2026 – Sunday, May 31, 2026 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

In 2008, a diagnosis of Nemaline Myopathy (NM) led one family to ask a critical question: “What can we do to help?”
That question led to establishing A Foundation Building Strength (AFBS) as a globally respected organization with an unflinching mission to find effective treatments for this genetic disorder that causes weakness in the skeletal muscles, affecting the ability to move, talk, swallow, and breathe.
By uniting leading scientists, clinicians, and determined families, AFBS has built the essential pillars of research—including registries, tissue repositories, animal models, and natural history studies—needed to find effective treatments.
Now, we are doubling down on our efforts to move from basic science to life-changing therapies. But we cannot do it alone.

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On the Blog

Music and a Mission: Ellary is Raising Her Voice for NM Awareness
Community Spotlights

Music and a Mission: Ellary is Raising Her Voice for NM Awareness

For 18-year-old Ellary, life is currently a study in dualities. The Rhode Island resident is balancing her final year of high school with her first year of college, navigating a curriculum focused on digital media production. Her goal is clear and professional: to transition into a four-year marketing program and eventually “create marketing campaigns with…

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Faces of NM: Lucas & the Rhythm of Resilience
Community Spotlights

Faces of NM: Lucas & the Rhythm of Resilience

In West Hartford, Connecticut, 11-year-old Lucas can often be found at his DJ controller, blending beats as a dedicated emcee and Daft Punk fan. When he isn’t practicing his sets, he’s usually with his cat, Aleister (aka “Sweetie”), hanging out with his cousins, or playing Roblox. His mom, Monica, says he’s “fiercely independent,” a trait…

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