Sitting at the intersection of research, clinical care, patient advocacy, and industry innovation, the American Neuromuscular Foundation (ANF) observed a need to better serve those living with late-onset neuromuscular diseases (LONDs) by bringing the community together and fostering collaboration to improve care, education, and quality of life. This is the rationale for establishing the Late-Onset Neuromuscular Disease Consortium (LONDC).
During the LONDC’s inaugural meeting, participants identified key gaps contributing to delays in diagnosing LONDs and prioritized potential areas of focus. Based on this input, the LONDC Steering Committee selected a project aimed at improving early recognition and awareness of LONDs to help shorten the diagnostic journey for patients and support clinicians in making timely referrals.
The LONDC has launched two key resources to help reduce delays in diagnosing LONDs:
Developed through patient and physician research, a series of workshops and focus groups, and a consensus process with neuromuscular specialists from both neurology and physical medicine rehabilitation, this tool assists first-line healthcare providers in identifying potential LOND symptoms earlier and guiding appropriate referrals.
This campaign and its accompanying website, WhyBehindWeakness.org, aim to help individuals recognize symptoms, seek guidance, and engage in earlier conversations with their healthcare providers.
Together, these resources reflect the LONDC’s commitment to improving recognition, referral pathways, and support for those affected by LONDs. More background on the work leading to this launch can be found in our 2025 progress report, available here.
The LONDC Steering Committee consists of representatives from advocacy organizations that serve people impacted by neuromuscular conditions. Steering Committee members provide ongoing strategic direction, advocate for the LONDC and its initiatives, and oversee and drive projects forward in alignment with the Steering Committee governance.
Contact us for sponsorship opportunities or to learn how your organization can participate in collaborative efforts to address unmet needs of individuals affected by late-onset neuromuscular diseases. Individuals can also help fund the ANF and LONDC by donating here.
© 2026 Late-Onset Neuromuscular Disease Consortium.
