In 2022, we made incredible progress toward our mission of finding treatments for Nemaline Myopathy. Check out this post to read and watch some of the biggest highlights from 2022.

Every year, we strive to accomplish more progress with the limited resources available, to bring us closer to understanding NM and finding treatments.

Research Institutions Funded

In 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)

Research Studies

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.

SciFam Conference

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.

New Webinars

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.

NYC Marathon & Family Gathering

We celebrated the Team AFBS runners at the NYC Marathon and hosted a Family Gathering for the NM community.

2nd Annual Spring Fundraiser

We held the 2nd Annual A Weekend of Building Strengthan annual AFBS fundraiser where anyone from around the world can join together to raise funds and bring awareness to NM. 

Board of Directors

We welcomed 2 new board members (Matt and Kelly Lloyd) and said farewell to one incredible board member (Patty Mitchell).

New Partnerships

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!

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