The LONDC has launched a clinical tool and consumer awareness campaign designed to reduce delays in diagnosis and empower both patients and clinicians to act faster. After significant progress in 2025, we enter 2026 with these resources live and ready to support the neuromuscular community.
The LONDC is focused on amplifying the reach of these new tools. These resources are being integrated into a broader communications strategy to ensure clinicians, patients, and community stakeholders can easily access and engage with the materials available at WhyBehindWeakness.org.
2025 Achievements That Shaped Our Launch
- Clinical Recognition & Referral Tool Consensus
- Primary research with physicians and patient communities (more information available here) informed the development of a draft of a clinical tool.
- We refined the tool through a structured consensus process with a virtual panel of 32 U.S.-based neuromuscular specialists from both neurology and physical medicine rehabilitation.
- Using a modified Delphi methodology across two rounds of anonymous online surveys, the panel reached more than 80% agreement on the tool’s content and utility, clearing the way for launch.
- “Why Behind Your Weakness” Campaign
- In parallel, we developed the creative foundation for a public-facing consumer awareness campaign. Clinicians and patient community members evaluated messaging, look, and tone, and offered valuable feedback.
- This campaign is now live and aims to educate consumers about LOND symptoms and encourage individuals to seek guidance and advocate for themselves earlier in the diagnostic journey.
- Presentation of LONDC Research Findings
- We shared our first research outputs at both the NORD Breakthrough Summit and the AANEM Annual Meeting in 2025.
- Our poster, Challenges in Recognizing Late-Onset Neuromuscular Diseases (LONDs) Demonstrate Need for Education & Tools to Support Early Detection and Referral, elevated awareness of clinician reported challenges to broaden awareness among rare neuromuscular communities and neuromuscular specialists.
The launch of our inaugural project marks an important beginning. The LONDC remains committed to improving recognition and referral of LONDs and to having meaningful impact for individuals and families affected by these conditions in the years ahead!
