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 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
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.

Learn More

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.

Learn More

On the Blog

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…

Read More
Turning the Tide on KBTBD13: An Exciting Update from Dr. Coen Ottenheijm
Research

Turning the Tide on KBTBD13: An Exciting Update from Dr. Coen Ottenheijm

At A Foundation Building Strength (AFBS), our $3.6 million research investment is currently fueling several high-impact projects aimed at one goal: finding effective treatments for Nemaline Myopathy. Today, we’re thrilled to share the latest progress from our second year of funding for Dr. Coen Ottenheijm and his team (Amsterdam University Medical Center (UMC), Radboud UMC,…

Read More