What 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 progress we’ve made together – all thanks to your incredible support!
Winter Wins:
- Research Advances: We celebrated exciting developments in four AFBS-funded research projects, bringing us closer to effective treatments for NM.
- Community Support: We launched a new webinar series to provide valuable resources for NM families and formed a Community Advisory Board to ensure we’re meeting the needs of those affected by NM.
- Team Spirit: We cheered on Team AFBS as they ran the NYC Marathon, raising awareness and funds for NM research!
- Collaboration and Growth: Our first in-person Scientific Advisory Board meeting brought together leading experts to guide our research strategy.
Summer Successes:
- Awareness Amplified: We celebrated the first annual Nemaline Myopathy Awareness Month and Day in May, raising awareness and educating the public about NM.
- Research Momentum: We shared several exciting research updates, highlighting the progress being made in the field.
- Building for the Future: The newly developed Scientific Advisory Board initiated discussions around the development of a comprehensive research roadmap, laying the foundation for strategic discussions and actionable priorities aimed at accelerating our research progress.
- Community Resources: We launched our online shop for AFBS-branded apparel and developed NM awareness packets filled with valuable information.
- Data Drives Progress: We saw a 17% increase in registration through our efforts to encourage NM community members to join the CMDIR, a vital database that helps scientists better understand the disease.
Spring into Action:
- New Leadership: We welcomed Jen Tozer as our new Executive Director, as founder Marc Guillet passed the torch of AFBS leadership.
- Expanding Reach: We launched our CMDIR campaign to increase participation in this crucial research database.
- Youth Empowerment: We introduced our Youth Ambassadors, inspiring young leaders who are making a difference in the NM community.
- Access to Care: We helped community members access free genetic testing, a crucial step in diagnosis and treatment.
Thank You for an Incredible Year!
None of this would have been possible without the incredible support of our community. Your enthusiasm, generosity, and dedication fuel our mission to find treatments and improve the lives of those with NM.
Looking Ahead to 2025
We’re closer than ever to finding treatments for NM, and we’re excited about what the future holds. But we can’t do it alone.
Join us in making 2025 even more impactful!
- 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.
Together, we can build a stronger future for everyone affected by Nemaline Myopathy.