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The American Neuromuscular Foundation (ANF) was happy to welcome six advocacy organization leaders to the Late-Onset Neuromuscular Disease Consortium Steering Committee (LONDC-SC)! In its first meeting, convened on April 21, 2023, the Steering Committee selected the Common Experience Research and Awareness Campaign as the LONDC’s first project.

This project aligns with the goals of the LONDC, has the potential to make an impact within a quick timeframe, and fits within the consortium’s current capacities and capabilities. Through a Common Experience Research and Awareness Campaign, we hope to improve time to diagnosis and treatment decisions for people living with late-onset neuromuscular conditions. We will do this by:

  • Gaining consensus on shared symptoms across late-onset neuromuscular diseases which should trigger a referral pathway to a neuromuscular specialist
  • Creating an easily remembered and shared acronym or mnemonic based on common symptoms
  • Creating a decision-making tool to help physicians identify a potential neuromuscular disease
  • Planning and executing an awareness campaign to educate multiple stakeholders

The ANF Board approved this project during its May 5, 2023 meeting, and planning is underway. Thank you to our Steering Committee and each organization, community member, and industry partner who provided input and feedback. Be on the lookout for more updates!