Unraveling the Mysteries of Nemaline Myopathy: A Transcontinental Effort The quest to understand and treat Nemaline Myopathy (NM) has taken a significant leap forward, thanks to a powerful collaboration between researchers across the globe. Dr. David Mack and his team at the University of Washington, in partnership with Dr. Joshua Clayton from Prof. Nigel Laing’s…
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We’re excited to share some encouraging news on the front lines of Nemaline Myopathy research. Dr. Afrooz Rashnonejad and her team, funded by the support of AFBS, have been making strides in developing a potential gene therapy for NEM3, a form of Nemaline Myopathy caused by mutations in the ACTA1 gene. Nemaline Myopathy Gene Therapy:…
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Dr. Vandana Gupta and her team at Brigham & Women’s Hospital, with funding from A Foundation Building Strength (AFBS), are making exciting progress in the quest to find treatments for Nemaline Myopathy (NM). This rare neuromuscular disease affects muscle function and can significantly impact quality of life. Here’s a quick update on their recent research…
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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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Nemaline Myopathy (NM) is a rare muscle disorder that weakens the body’s skeletal muscles. Finding effective treatments for NM has been challenging, in part due to the difficulty of recreating the disease in a laboratory setting. However, a recent research project funded by A Foundation Building Strength (AFBS) has made significant progress in overcoming this…
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At AFBS, we’re committed to finding treatments for Nemaline Myopathy (NM) through a diverse array of research approaches. From gene therapy to small molecules and disease management strategies, we’re investing in initiatives that hold the most promise for our community and we’re thrilled to share an exciting update on a groundbreaking Nemaline Myopathy exosuit research…
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There’s been exciting progress on a new approach treating Nemaline Myopathy (NM), the rare muscle disorder that causes weakness and low muscle tone. While researchers have identified twelve different faulty genes that cause NM and prevent muscles from working properly (ACTA1, NEB, TPM2, TPM3, KBTBD13, CFL2, KLHL40, KLHL41, LMOD3, MYPN, TNNT1, and TNNT3, with the…
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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.
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…
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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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