Community Spotlight: Audrey

Community Spotlight: Audrey

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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Amplifying Voices, Building Strength: AFBS’ Webinar Series Culmination

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…

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AFBS 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…

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The 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…

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Introducing 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

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

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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