Dreaming of a getaway but wondering about accessible travel? You’re in luck! A Foundation Building Strength (AFBS) recently hosted an incredibly informative webinar, “Accessible Adventures – Travel Q&A with Cory Lee,” as part of our “Building Strength Together” Webinar series. Led by moderator and AFBS board member Lyn Baier, we spoke with renowned accessible travel…
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A Foundation Building Strength (AFBS) is absolutely thrilled to present our NM Awareness Month Recap and look back on a truly impactful May! For families and individuals touched by this rare neuromuscular disease, awareness is deeply personal – it’s about sharing our stories, speeding up research, and ultimately, building a path toward effective treatments. Our…
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Meet Liv, a thoughtful and determined 13-year-old navigating the complexities of her teenage years and Nemaline Myopathy (NM) in Los Angeles, California. For those not familiar with Nemaline Myopathy, it’s a rare neuromuscular disease that weakens the muscles throughout the body, including those involved in movement, speech, swallowing, and breathing. The way NM manifests and…
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Meet Priscilla, a bright and inquisitive 9-year-old from Mason, Ohio, living with Nemaline Myopathy (NM). NM is a rare genetic condition affecting the muscles, leading to significant weakness throughout the body. Priscilla carries the NEB gene variant and is considered to be severely affected by the disease, impacting her mobility, breathing, speech, and swallowing. A…
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Meet Anthony, a 32-year-old graphic designer from the vibrant city of Haarlem, The Netherlands, who approaches life with a practical mindset and a genuine enthusiasm for connection and exploration. Understanding Nemaline Myopathy: Anthony’s Perspective For those unfamiliar with Nemaline Myopathy (NM), it’s a rare congenital neuromuscular disease, rooted in genetic mutations on one of 12…
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Meet Audrey, a vibrant 6-year-old girl from Texas who approaches life with a joyful spirit, even while navigating the challenges of living with Nemaline Myopathy (NM). For those unfamiliar, NM is a rare neuromuscular disease linked to mutations in at least 12 different genes (with NEB and ACTA1 being the most common). It affects the…
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Meet Tessa, a bright and resilient 3-year-old from Malta living with Nemaline Myopathy. Located in the Mediterranean, Malta is a small island country spanning just 122 square miles (316 km²) with a population of just over half a million. What makes Tessa’s story even more unique is that she is the only person in Malta…
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Get ready for a meaningful step forward in our drive to discover effective treatments for Nemaline Myopathy! A Foundation Building Strength (AFBS) is honored to be selected for the Chan Zuckerberg Initiative’s prestigious Digital Natural History Accelerator Program, powered by Citizen Health. This incredible opportunity marks an important milestone, one that can revolutionize how we…
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May is Nemaline Myopathy Awareness Month, a time for our community to come together, share our stories, and amplify our voices. This year, A Foundation Building Strength is thrilled to introduce an exciting new way for everyone – NM community members and the public alike – to get involved: The NM Awareness Share-A-Thon! WHAT IS…
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A Foundation Building Strength (AFBS) is excited to share updates showcasing the significant progress being made in research projects enabled by donor support. We are witnessing meaningful advancements in NM therapies, and our efforts to develop treatments and therapies for Nemaline Myopathy (NM) continue to yield promising results. A Refined Mouse Model for NEB-Related NM…
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An Inside Look at the Beggs Lab and a Call to Action for the NM Community Recently, A Foundation Building Strength’s Executive Director, Jen Tozer, had the opportunity to visit the renowned Beggs Lab at Boston Children’s Hospital, home to the groundbreaking AFBS funded Nemaline Myopathy Biobank. From getting a chance to see how these…
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