At A Foundation Building Strength (AFBS), our unwavering commitment to those affected by Nemaline Myopathy (NM) drives us to continually develop resources that empower individuals and families on their journey. We are excited to introduce two new resources that aim to provide valuable information, support, and awareness about NM: the Nemaline Myopathy Resource Kit and…
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Connecting Nemaline Myopathy Families: A Recap of Regional Gatherings
At A Foundation Building Strength, we are committed to making a positive impact in the lives of individuals and families affected by Nemaline Myopathy (NM), a rare muscle disorder causing muscle weakness. This summer, we’ve had the incredible opportunity to bring NM families together through a series of Regional Gatherings. These events not only provided…
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Community Spotlight: Ellary
This “Community Spotlight” series highlights and celebrates our unique and wonderful NM community members. The Q&A will give a peek into the lives of individuals living with NM and the diversity they represent.
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AFBS Elevates Nemaline Myopathy Research with $1.2 Million Grant to Brigham and Women’s Hospital
Brigham and Women’s Hospital’s Spring Issue highlights a $1.2 million grant from AFBS and the Machado family, supporting research for rare muscle disorder nemaline myopathy.
Read MoreDeveloping NM Community Priorities: Listening to YOU
In the latest webinar of the series, “Amplifying the NM Community’s Voice”, we were joined by peers and Nemaline Myopathy (NM) experts to better understand challenges and opportunities related to NM, identifying priorities and ultimately advancing research. Watch the full webinar to hear all the insight, announcements and feedback from peers and clinicians: NM Natural…
Read MoreInstaNM: A New Series Highlighting Adaptations to Navigate a World with Nemaline Myopathy
Join us as we take a peek into the lives of community members of all ages and from all walks of life as they show us how they’ve adapted to navigate their world with Nemaline Myopathy. First up, hit the ope road with Lucinda and her adapted driving vehicle.
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Tools Used to Study the Spectrum of Nemaline Myopathy
In the latest webinar of the series, “Amplifying the NM Community’s Voice”, we were joined by three expert Nemaline Myopathy (NM) researchers from across North America who shared thorough updates on models (or tools) that have been created for use in gene-specific NM research.
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Planning a Local NM-Focused Event Near You
A Foundation Building Strength (AFBS) is excited to support smaller, regional gatherings for NM families to stay connected around the world.
Read MoreCommunity Spotlight: Lucinda
This “Community Spotlight” series highlights and celebrates our unique and wonderful NM community members. The Q&A will give a peek into the lives of individuals living with NM and the diversity they represent.
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A Year in Review: 2022
In 2022, we made incredible progress toward our mission of finding treatments for Nemaline Myopathy. Check out this post to read and watch some of the biggest highlights from 2022.
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NM Research Progress: Dr. Dowling’s CRISPR/Cas9 Project
AFBS is investing in research to bring us closer to treatments for Nemaline Myopathy (NM). Dr. Dowling at SickKids Hospotal is exploring the application of CRISPR/Cas9 to NM therapeutics, and we’re funding his latest research.
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