Amplifying the NM Community’s Voice” Webinar Recap In our recent webinar, we delved into how you can play a pivotal role in shaping the future of Nemaline Myopathy treatments, underscoring the essential role the community plays in accelerating treatment timelines. We were honored to be joined by exceptional guest speakers, including Jill Anne Castle, a…
Read MoreIntroducing Nemaline Myopathy Resource Kit and Awareness Card: Empowering the NM Community
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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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…
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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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