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

Upcoming Events

  • 2024 Nemaline Myopathy Awareness Day

    May is Nemaline Myopathy Awareness Month, culminating in the First Annual Nemaline Myopathy Awareness Day on Friday, May 31, 2024! Join us as we come…

    Friday, May 31, 2024 Worldwide
  • 2024 TCS New York City Marathon

    Run or Walk 26.2 Miles For Nemaline Myopathy Research We are proud to be selected as an official charity partner of the 2024 TCS New…

    Sunday, November 3, 2024 8:00 am - 10:00 am New York, NY
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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.

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. Learn More.

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
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On the Blog

FACES OF NM: A Mother-Son Duo Finding Strength Together

FACES OF NM: A Mother-Son Duo Finding Strength Together

𝘛𝘩𝘪𝘴 𝘪𝘴 𝘵𝘩𝘦 𝘭𝘢𝘵𝘦𝘴𝘵 𝘪𝘯𝘴𝘵𝘢𝘭𝘭𝘮𝘦𝘯𝘵 𝘪𝘯 𝘰𝘶𝘳 “𝘍𝘢𝘤𝘦𝘴 𝘰𝘧 𝘕𝘔” 𝘴𝘦𝘳𝘪𝘦𝘴, 𝘱𝘳𝘰𝘧𝘪𝘭𝘪𝘯𝘨 𝘴𝘰𝘮𝘦 𝘰𝘧 𝘵𝘩𝘦 𝘮𝘦𝘮𝘣𝘦𝘳𝘴 𝘰𝘧 𝘰𝘶𝘳 𝘶𝘯𝘪𝘲𝘶𝘦 𝘢𝘯𝘥 𝘥𝘪𝘷𝘦𝘳𝘴𝘦 𝘕𝘔 𝘊𝘰𝘮𝘮𝘶𝘯𝘪𝘵𝘺. Noelle Nuñez and her son, Ezmile, are rewriting the narrative of Nemaline Myopathy (NM). Noelle’s journey began invisibly, a condition that went undiagnosed for years, silently shaping her life. “I didn’t get…

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