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:
- ACCELERATING GROUNDBREAKING RESEARCH: While we continue to fund many existing research projects showing exciting results, we are committed to explore even more avenues of research that could lead to life-changing treatments. Our new Scientific Advisory Board, made up of a multidisciplinary panel of experts, is actively working to identify promising new areas of research to fund.
- LAUNCHING THE NM NATURAL HISTORY STUDY: This landmark study with multiple participating sites including Stanford Health Care, UT Southwestern, Boston Children’s Hospital, NIH, St. Jude’s Children’s Hospital and Sick Kids Hospital (Toronto) and funded by AFBS, will provide a detailed map of NM progression, including individuals from birth through age 18. By tracking how the disease develops over a three year period, this study aims to uncover critical insights that will drive the development of more targeted and effective treatments.
- EXPANDING COMMUNITY RESOURCES: We’re mapping out new resources to support and empower individuals and families affected by NM. This includes the continuation of our ongoing “Building Strength Together” webinar series, offering vital information and connection to our community members. Keep an eye out for the launch of our new in-depth Patient Survey, designed to help us understand the needs of the NM community and guide our future investments. This survey will serve as a valuable tool, helping us navigate toward the most effective and promising path forward.
- 2025 SCIFAM CONFERENCE: We’re proud to co-host the return of the Scientific and Family Conference taking place this August in Philadelphia, Pennsylvania, USA. This gathering is a vital opportunity for the NM community to come together to share experiences and forge lasting connections, learn about the latest in NM care and research, and celebrate our collective progress. (Registration details coming soon!)
NAVIGATING THE ROAD AHEAD
As we stand poised at the intersection of hope and innovation, AFBS is navigating the road to treatment with commitment and determination. Your generous support is the fuel that drives our progress, and we can’t wait to reach new and exciting milestones with you in 2025!
FUEL OUR JOURNEY!
- Donate: Your gift will support critical research and provide vital resources for NM families.
- Stay Connected: Sign up for our email list to receive the latest updates from AFBS and learn more about NM research. Are you an individual or a caregiver of an individual affected by NM? Fill out the AFBS Contact Survey so we can connect you with valuable resources, support, and opportunities to get involved with upcoming research studies!
Together, we’re driving toward a stronger future for everyone affected by NM.