Mila Giselle Davila is all smiles and sunshine. At five years old, the Houston, TX resident exudes a vibrancy that transcends the challenges of living with Nemaline Myopathy (NM), a rare congenital muscle disease. But Mila’s journey began with a fight, a fight that would shape her life and the lives of those who love her most.
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The second installment in our “Faces of NM” series featuring the unique stories of members in our diverse and incredible Nemaline Myopathy community. Nicole Riedie, a marketing professional from Sherwood, Arkansas, is no stranger to adversity. Diagnosed with Nemaline Myopathy (NM) at a young age, Nicole has faced a lifetime of challenges, yet her story…
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The first installment in a series of profiles featuring the unique stories of members in our diverse and incredible Nemaline Myopathy community. Jonathan and His Foster Son Christopher Face the Challenges of Nemaline Myopathy Together Dallas, Texas resident Jonathan Roberts isn’t your average dad. He’s a respiratory therapist who formed an extraordinary bond with a…
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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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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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The AFBS community is filled with inspiring stories of resilience and strength. Today, we shine a light on Erica Redinbo, a mother running the 2024 Boston Marathon in honor of her daughter Kinsley, who bravely battled Nemaline Myopathy (NM). Erica describes Kinsley as the “strongest person I’ve ever known,” even though NM took her physical…
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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.
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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.
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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.
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…
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