Here are some resources to help you learn more about clinical trial research and neuromuscular diseases.

General information

Become more familiar with how clinical trial research works and its importance by visiting the National Institutes of Health (NIH) website.

Support Groups

• Myasthenia Gravis Association (MGA) Kansas City
• Muscular Dystrophy Association (MDA) Kansas City
• Amyotrophic Lateral Sclerosis Association (ALSA)
• CureSMA (spinal muscular atrophy)
• The Myositis Association (TMA)
• American Diabetes Association (ADA)
• Facioscapulohumeral muscular dystrophy (FSHD) Society
• The Foundation for Peripheral Neuropathy (PN)

The Myositis Association Myositis Research Webinar

Inclusion Body Myositis (IBM),  Dr. Mazen Dimachkie, Professor of Neurology at the University of Kansas Medical Center, discusses his team's research and answers questions about IBM, October 12, 2023. View a recording of the Inclusion Body Myositis (IBM) webinar below, or on YouTube.

MDA Scientific Conference

• Motor Outcomes to Validate Evaluations in Pediatric Facioscapulohumeral muscular dystrophy (MOVE Peds): Protocol for an observational study.
• Dose-Finding Safety and Tolerability Study of Clenbuterol in Facioscapulohumeral Muscular Dystrophy (FSHD)