A Foundation Building Strength (AFBS) proudly announces a significant expansion of its Nemaline Myopathy (NM) research efforts through the launch of the Beggs Laboratory NM Biobanking Program at Boston Children’s Hospital. This groundbreaking initiative builds upon the existing AFBS-sponsored NM Tissue Repository and aims to revolutionize our understanding of NM, forging a path toward new…
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It’s Nemaline Myopathy Awareness Month, and A Foundation Building Strength is excited to celebrate all May long! We’re raising awareness for this rare muscle disorder and fostering connections within the NM community. Throughout the month, we have a huge variety of exciting events and resources planned to help shine a light on Nemaline Myopathy, all…
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Living with Nemaline Myopathy (NM)? Join the global fight for treatments & therapies! Register with the CMDIR and unlock access to clinical trials, resources, and a supportive community. Be the hero of your story.
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2023 was a landmark year for the AFBS community, marked by unwavering dedication, meaningful connections, and significant progress in the search for treatments for Nemaline Myopathy (NM). Our Year in Review video is a powerful testament to the collective strength and passion driving this journey.
Read MoreThe journey to find treatments for rare congenital muscle disease, Nemaline Myopathy, is a collective effort, and A Foundation Building Strength (AFBS) has been at the forefront of this mission. Recently, the organization concluded a groundbreaking 10-part webinar series titled “Amplifying the NM Community’s Voice,” made possible by the Patient-Centered Outcomes Research Institute (PCORI). This…
Read MoreRecently, the AFBS team had the privilege of attending the World Muscle Society Congress in South Carolina, where AFBS’ Scientific Director, Gus Dziewczapolski, AFBS’ Program Manager, Stacy Cossette, and AFBS’ PCORI Program Coordinator, Sarah Foye, participated in this enlightening event. Pictured Above: AFBS Scientific Director, Gus Dziewczapolski, AFBS Scientific Advisory Dr. Alan Beggs, AFBS Program Director Stacy…
Read MoreAmplifying 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 MoreAt 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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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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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 MoreIn 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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