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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At A Foundation Building Strength, we’re driven in our unwavering pursuit of treatments for Nemaline Myopathy (NM). Today, we’re excited to announce a significant step forward in that journey: a new series of grants designed to accelerate the development of effective therapies for this rare neuromuscular disorder. This RFA represents a major opportunity for researchers…
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An In-Depth Webinar Exploring Cutting-Edge Respiratory Devices and Therapies for NM A Foundation Building Strength recently hosted another insightful session in our Building Strength Together Webinar Series, this time focusing on “A User’s Guide to the Latest in Respiratory Therapy Devices.” This webinar offered a deep dive into cutting-edge respiratory equipment and techniques, providing invaluable…
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Thanks to the ongoing support of our donors, AFBS continued to make incredible progress on the road to treatment for Nemaline Myopathy in 2024. As we kick off 2025, we’re excited to share our itinerary for the year ahead – and it’s filled with promising milestones! HERE’S WHAT’S ON THE HORIZON: NAVIGATING THE ROAD AHEAD…
Read MoreWhat a year it’s been! As 2024 comes to a close, we’re taking a moment to celebrate the incredible strides we’ve made together on the road to find treatments Nemaline Myopathy. From research breakthroughs to community building, it’s been a year of milestones and achievements. We invite you to join us in reflecting on the…
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