Webinars

AFBS Summer 2026 Research Update Q & A: Spotlights & Insights

Saturday, June 6th, 2026 the community joined us to take an in-depth look at some of the cutting-edge research we are currently funding to find treatments for NM.

Take an inside look at the road to clinical trials: AFBS walks you through our latest research investments and explain the drug and therapy development lifecycle, so you can see exactly where we stand on the path to patient trials.

Then you’ll hear from two lead NM investigators on active AFBS-funded projects. 𝗗𝗿. 𝗩𝗮𝗻𝗱𝗮𝗻𝗮 𝗚𝘂𝗽𝘁𝗮 (Brigham and Women’s hospital) and 𝗗𝗿. 𝗝𝗶𝗺 𝗗𝗼𝘄𝗹𝗶𝗻𝗴 (University of Pennsylvania) will report on recent milestones, their latest findings, and what’s coming next!

𝘋𝘪𝘴𝘤𝘭𝘢𝘪𝘮𝘦𝘳: 𝘈𝘭𝘭 𝘳𝘪𝘨𝘩𝘵𝘴 𝘳𝘦𝘴𝘦𝘳𝘷𝘦𝘥. 𝘛𝘩𝘪𝘴 𝘳𝘦𝘤𝘰𝘳𝘥𝘪𝘯𝘨 𝘤𝘰𝘯𝘵𝘢𝘪𝘯𝘴 𝘶𝘯𝘱𝘶𝘣𝘭𝘪𝘴𝘩𝘦𝘥 𝘥𝘢𝘵𝘢 𝘢𝘯𝘥 𝘤𝘰𝘯𝘧𝘪𝘥𝘦𝘯𝘵𝘪𝘢𝘭 𝘳𝘦𝘴𝘦𝘢𝘳𝘤𝘩 𝘧𝘪𝘯𝘥𝘪𝘯𝘨𝘴. 𝘕𝘰 𝘱𝘢𝘳𝘵 𝘰𝘧 𝘵𝘩𝘪𝘴 𝘱𝘳𝘦𝘴𝘦𝘯𝘵𝘢𝘵𝘪𝘰𝘯—𝘪𝘯𝘤𝘭𝘶𝘥𝘪𝘯𝘨 𝘴𝘭𝘪𝘥𝘦𝘴, 𝘨𝘳𝘢𝘱𝘩𝘪𝘤𝘴, 𝘢𝘯𝘥 𝘪𝘮𝘢𝘨𝘦𝘴—𝘮𝘢𝘺 𝘣𝘦 𝘳𝘦𝘱𝘳𝘰𝘥𝘶𝘤𝘦𝘥, 𝘥𝘪𝘴𝘵𝘳𝘪𝘣𝘶𝘵𝘦𝘥, 𝘰𝘳 𝘵𝘳𝘢𝘯𝘴𝘮𝘪𝘵𝘵𝘦𝘥 𝘪𝘯 𝘢𝘯𝘺 𝘧𝘰𝘳𝘮 𝘰𝘳 𝘣𝘺 𝘢𝘯𝘺 𝘮𝘦𝘢𝘯𝘴 𝘸𝘪𝘵𝘩𝘰𝘶𝘵 𝘵𝘩𝘦 𝘱𝘳𝘪𝘰𝘳 𝘸𝘳𝘪𝘵𝘵𝘦𝘯 𝘱𝘦𝘳𝘮𝘪𝘴𝘴𝘪𝘰𝘯 𝘰𝘧 𝘈 𝘍𝘰𝘶𝘯𝘥𝘢𝘵𝘪𝘰𝘯 𝘉𝘶𝘪𝘭𝘥𝘪𝘯𝘨 𝘚𝘵𝘳𝘦𝘯𝘨𝘵𝘩 𝘢𝘯𝘥 𝘵𝘩𝘦 𝘱𝘳𝘦𝘴𝘦𝘯𝘵𝘪𝘯𝘨 𝘪𝘯𝘷𝘦𝘴𝘵𝘪𝘨𝘢𝘵𝘰𝘳𝘴.

AFBS Winter 2025 Research Update Q & A

Saturday, November 15th, 2025 community members, supporters, and researchers joined some of the scientists leading AFBS funded projects for a special Nemaline Myopathy Research Update Webinar highlighting our latest research investments!

This was a rare opportunity to hear directly from some of the investigators leading our newest AFBS-funded research projects—including Dr. Afrooz Rashnonejad, Dr. David Mack, and Dr. Tina Duong of the NM Natural History Study.

They shared their discoveries and next steps on the path toward effective treatments. Whether you’re a family, researcher, or supporter, don’t miss your chance to hear how AFBS-funded research is driving progress

Accessible Adventures: Travel Q & A with Cory Lee

Dreaming of a getaway but wondering about accessible travel? You’re in luck! This incredibly informative webinar, moderated by AFBS board member Lyn Baier, features renowned accessible travel expert and influencer Cory Lee (Curb Free with Cory Lee) and his mother/caregiver, Sandy Lee.

Cory & Sandy share a candid and comprehensive discussion on making world travel as barrier-free as possible, offering a wealth of practical tips and resources.*

In this valuable webinar, Cory and Sandy cover a wide array of topics, including:

• Flying with a wheelchair: Streamlining airport security, preparing equipment for cargo, and navigating in-flight accessibility.
• Accessible accommodations: Tips for finding and booking truly accessible hotels and vacation rentals.
• Beach accessibility: Options for enjoying the shoreline, from all-terrain wheelchairs to accessible resorts.
• Cruising with a disability: Top accessible cruise lines and shore excursion considerations.
• Navigating accessible cities: Public transportation and tour company recommendations worldwide.
• Essential travel tips: The importance of travel insurance, finding accessible restrooms, and roadside assistance.

*For a comprehensive list and links to the resources mentioned in this webinar, visit our recap blog!

A User’s Guide to the Latest in Respiratory Therapy Devices

This webinar is a must-watch for individuals affected by Nemaline Myopathy (NM), their caregivers, and anyone interested in learning more about respiratory health management. Respiratory therapist Chris Burgess BS, RRT-NPS, RCP, with his extensive experience in home-based care for patients with complex medical needs, offers valuable insights into the following devices and their applications:

Portable Mechanical Ventilation: Learn about the latest advancements in portable ventilators, their benefits, and how they can improve quality of life.

Mechanical Insufflation/Exsufflation (I/E): Understand how I/E devices can assist with airway clearance and improve respiratory function.

Oscillating Secretion Mobilization: Discover the benefits of oscillating secretion mobilization techniques and how they can help manage secretions.

Research Fundamentals, Part 1

The webinar defines PCOR (Patient Centered Research Outcomes and review of the role of the CRPs (Community Research Partners), reviews existing infrastructure in place to support NM research and how families can get involved. Dr. Michael Lawlor discusses the importance of human tissue resources in biomedical research.

Research Fundamentals, Part 2

The webinar shares the Toolkit for Patient-Focused Therapy Development, encourages participation in the CMDIR registry, and shares the importance of tissue sample donations. It also discussed Translational Science as an essential part of the path to treatment for NM.

Pathway to a Natural History Study

The webinar focuses on the pathway to a Natural History Study for Nemaline Myopathy. Guest speakers included Leslie Hayes, MD, Pediatric Neurologist, Lindsay Alfano, PT, DPT, PCS and Research Partner, and Alan Beggs, PhD and Scientific Partner. For more information on data literacy and medical research, watch this new NORD video.

Why Genetic Confirmation Matters for Treatment

The webinar focuses on the importance of genetic confirmation. Dr. Carsten Bönnemann, a world renowned board-certified Pediatric Neurologist, presents the “Gene Therapy Toolbox”. Genetic counselor, Brianna Gross shares “a roadmap to confirming genetic subtype”.

Listening to the Adult NM community

The webinar offers the NM-affected adult community a space for communication, and share feedback and guidance to help improve our overall efforts as an organization. Every voice matters and we want to hear from the entire community to better represent the research priorities.

Tools Used to Study the Spectrum of NM

The webinar features three expert Nemaline Myopathy (NM) researchers from across North America who share thorough updates on models (or tools) that have been created for use in gene-specific NM research. 

Developing NM Community Priorities

This webinar offers personalized discussions among peers and experts to better understand challenges and opportunities related to Nemaline Myopathy, identifying therapeutic priorities and ultimately advancing research.

The Road to Treatment: Preparing the NM Community for Clinical Trials

This webinar will help you discover how YOU can shape the future of Nemaline Myopathy treatments. Learn about your vital role in engaging policymakers, navigating the FDA process, and accelerating treatment timelines. Drawing from her extraordinary experiences, guest speaker Jill Anne Castle, a trailblazer from the earliest DMD clinical trials to approval of a groundbreaking gene therapy, will empower us with insights into advancing research. Join esteemed CMD leaders, Rachel Alvarez and Rob Sunris, who’ll share invaluable strategies for engaging policy makers and navigating FDA interactions.