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…
Read More
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…
Read More
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…
Read More
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…
Read More
This past weekend, Nemaline Myopathy community members of the New York area and our board members came together to cheer on Team AFBS as our five amazing runners tackled the iconic New York City Marathon. In addition to spending months training and bringing awareness to Nemaline Myopathy (NM), these generous marathoners raised over $30,000 for…
Read More
Unraveling the Mysteries of Nemaline Myopathy: A Transcontinental Effort The quest to understand and treat Nemaline Myopathy (NM) has taken a significant leap forward, thanks to a powerful collaboration between researchers across the globe. Dr. David Mack and his team at the University of Washington, in partnership with Dr. Joshua Clayton from Prof. Nigel Laing’s…
Read More
This past weekend marked the start of something truly special for the NM community. A Foundation Building Strength launched their “Building Strength Together” Webinar Series, a platform designed to foster connection, support, and education for individuals and families navigating the challenges of NM. The first session focused on Emotional Wellness, a critical but often overlooked…
Read More
We’re excited to share some encouraging news on the front lines of Nemaline Myopathy research. Dr. Afrooz Rashnonejad and her team, funded by the support of AFBS, have been making strides in developing a potential gene therapy for NEM3, a form of Nemaline Myopathy caused by mutations in the ACTA1 gene. Nemaline Myopathy Gene Therapy:…
Read More
Dr. Vandana Gupta and her team at Brigham & Women’s Hospital, with funding from A Foundation Building Strength (AFBS), are making exciting progress in the quest to find treatments for Nemaline Myopathy (NM). This rare neuromuscular disease affects muscle function and can significantly impact quality of life. Here’s a quick update on their recent research…
Read More
A Foundation Building Strength (AFBS) proudly announces a significant expansion of its Nemaline Myopathy (NM) research efforts through the launch of the Beggs Laboratory NM Biobanking Program at Boston Children’s Hospital. This groundbreaking initiative builds upon the existing AFBS-sponsored NM Tissue Repository and aims to revolutionize our understanding of NM, forging a path toward new…
Read More