This past year, we have made incredible progress toward our mission of finding treatments for Nemaline Myopathy. Watch this video to check out some of the highlights from 2022:
We funded 10 research studies throughout the world, with research institutions including:
- Folkhalsan Research Center (Finland)
- University of Copenhagen (Denmark)
- Harry Perkins Institute of Medical Research (Western Australia)
- Monash University (Australia)
- Brigham and Women’s Hospital, Boston (USA)
- University of Arizona (USA)
- Hospital for Sick Children (Canada)
- Univ. of California, Riverside (USA)
- University of Washington (USA)
Of the 10 studies, 3 focused on “Basic Science“: helping researchers better understand key information about Nemaline Myopathy
6 projects focused on “Translational Science“, turning observations from basic science studies into therapeutic interventions.
1 project focused on a wearable technology to support muscle function.
We hosted the SciFam Conference (Scientific and Family Conference), in Nashville, TN, a four day neuromuscular conference for both in-person and virtual stakeholders, welcoming NM families and AFBS funded researchers from around the world.
We facilitated 5 webinars focused on “Amplifying the NM Community’s Voice”, in partnership with PCORI (Patient-Centered Outcomes Research Institute). The webinars included updates from researchers, opportunities for NM community members to be involved in driving forward NM research, basics of research fundamentals, topics on building a lasting infrastructure to support meaningful research initiatives, getting involved in the CMDIR and tissue repository, a pathway to a natural history study, and why genetic confirmation matters for treatment.
We celebrated Team AFBS runners at the NYC Marathon and hosted a Family Gathering for the NM community.
We held the 2nd Annual A Weekend of Building Strength: an annual AFBS fundraiser where anyone from around the world can choose a physical activity, raise funds and bring awareness to NM.
We welcomed 2 new board members (Matt and Kelly Lloyd) and said farewell to one incredible board member (Patty Mitchell).
We gratefully partnered with the Chan Zuckerberg Initiative, Rare as One Project, helping us build our capacity, improve diagnosis and diversity, equity, and inclusion within the NM community.
We have made incredible steps toward Nemaline Myopathy treatment, expanding our progress as the leading non-profit supporting Nemaline Myopathy research.
Thank you for your role in our progress in 2022!