The Late-Onset Neuromuscular Disease Consortium (LONDC) is excited to begin its first project, the Common Experience Research and Awareness Campaign. This project aims to address the critical need for timely diagnosis in the late-onset neuromuscular disease (LOND) community. By identifying and gaining consensus among physicians and community representatives on common symptoms and triggers, we hope to support earlier access and referral to the correct specialists, connecting individuals with LONDs to diagnosis and treatment decisions more quickly. Broader goals of this project include:
- Improve awareness, understanding, and identification of LONDs
- Increase access to resources and support services
- Enhance collaboration and coordination among providers, advocacy organizations, and the LONDC community
This project is estimated to take a total of two and a half years in a phased approach. In the first phase, the LONDC will identify common symptoms across LONDs, secure consensus among physicians and patients, and create two tools. The first tool is a symptom-based decision-making tool for physicians to better recognize or identify when to refer a patient with a LOND to a neuromuscular specialist. In contrast, the second tool is a consumer-focused mnemonic to help a person identify symptoms that might be indicative of a LOND and advocate for a referral. The second phase of this project will leverage these tools into developing and implementing an awareness campaign.
While there is no clear clinical definition of ‘late-onset’ conditions, the conditions we are targeting to include and work with experts in that typically manifest in adulthood include the following:
- Acute Inflammatory Demyelinating Polyradiculopathy (Guillain-Barré)
- Adult spinal muscular atrophy
- Amyotrophic lateral sclerosis
- Becker muscular dystrophy
- Charcot-Marie-Tooth
- Chronic inflammatory demyelinating polyradiculoneuropathy
- Congenital muscular dystrophy (COL6)
- GNE myopathy
- hATTR polyneuropathy
- Inclusion body myositis
- Lambert-Eaton myasthenic syndrome
- Late-onset Pompe disease
- Limb-girdle muscular dystrophy
- Myasthenia gravis
- Myotonic dystrophy type 1
- Spinal and bulbar muscular atrophy (Kennedy’s Disease)
- VCP Disease
Our sponsors, partners, and Steering Committee members have been integral to starting this project. We sincerely believe that the Common Experience Research and Awareness Campaign will significantly impact the health and well-being of individuals and families. To learn more information about this project and how you or your organization can get involved, contact LONDC@neuromuscularfoundation.org.
