The 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…
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Running for Hope: AFBS at the 2023 TCS NYC Marathon
The 2023 TCS NYC Marathon was more than just a race; it was a powerful demonstration of collective strength, determination, and unwavering support for those affected by Nemaline Myopathy (NM). A Foundation Building Strength (AFBS) spearheaded a team of remarkable individuals who not only laced up their running shoes but also rallied communities and hearts…
Read MoreAFBS Attends the 28th Annual International World Muscle Society Congress in South Carolina
Recently, 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 MoreThe Road to Treatment: Preparing the Nemaline Myopathy Community for Clinical Trials
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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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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