Mazen Dimachkie, M.D., traces his passion for understanding and treating muscle disorders and researching muscle pathology back to the 1990s when he was an electromyography and neuromuscular medicine fellow at the University of Texas Health Science Center at Houston. Since then, the professor of neurology at the University of Kansas Medical Center has used that passion to fuel his ongoing work as a dedicated physician-scientist.

Now an accomplished neurologist and widely recognized neuromuscular expert, Dimachkie is pouring that infectious energy into his newly elected role of coordinator for the (IMACS), a consortium of 600 health care professionals focused on improving the lives of people with myositis through research.

Taking an active role

As one of a quartet of IMACS coordinators, Dimachkie will help manage many of the organization’s functions, such as providing oversight of the website, membership communication and engagement, elections, and the annual meeting committee and various other committees’ activities. Coordinators also help mentor junior investigators.  

“IMACS is the go-to organization as it pertains to myositis research. It’s an active and dynamic organization with significant ongoing activities across the spectrum of its scientific interest groups (SIGs) and committees,” Dimachkie said. “In my role as a coordinator, my vision is to help IMACS evolve into a self-sustaining organization by exploring a myriad of funding opportunities that will allow us to expand our work. I believe my perspectives from the neurology and neuromuscular viewpoints will be instrumental in widening the audience and enlarging IMACS’s footprint.”

The other IMACS coordinators are:

• Hector Chinoy, Ph.D., professor of rheumatology and neuromuscular disease, University of Manchester, UK
• Lisa Rider, M.D., head and senior research physician, Hatfield Clinical Research Center, Deputy Chief, Environmental Autoimmunity Group, Clinical Research Branch, National Institute of Environmental Health Sciences, National Institutes of Health
• David A. Isenberg, M.D., professor of rheumatology, University College London, UK

Dimachkie and Chinoy were elected this year to succeed IMACS co-founder Fred Miller, M.D., Ph.D., who retired and became an emeritus coordinator after fulling coordinator responsibilities for 20 years.   

“It’s a huge honor to be entrusted with the future of IMACS and to be elected to replace Dr. Fred Miller, a luminary and a giant in the field of myositis,” Dimachkie said. “It’s great that Dr. Miller will stay on as an emeritus member of the coordinator committee. I look forward to collaborating with Dr. Rider, Dr. Isenberg and Dr. Chinoy to advance myositis research and education.”

Dedicated researcher

Dimachkie has consistently pushed the boundaries of science as an innovative researcher who has authored or co-authored more than 500 abstracts, articles and book chapters. He is a frequently invited national and international lecturer on myositis, Pompe disease, ALS, myasthenia gravis, neuropathy, CIDP and other neuromuscular topics. He has served on the executive committee of the and currently is the group’s treasurer. 

Dimachkie is the principal investigator on a multicenter, international, randomized, controlled Phase 2/3 clinical trial investigating the efficacy and safety of the drug arimoclomol for inclusion body myositis (IBM), a progressively disabling rare disease with no known effective treatment. The study was funded by a grant from the U.S. Food and Drug Administration Office of Orphan Products Development and further supported by Orphazyme, a biopharmaceutical company. from that study were disappointing.

“Because there currently is no effective treatment for IBM, research and discovery in this rare disease is critically important,” Dimachkie said. “Despite the recent disappointment, my team and I are determined to continue on the path of research and discovery to find an effective treatment for IBM.”

 Earlier this year, Dimachkie earned a two-year $200,000 grant from The Myositis Association to fund U.S. sites participating in an international, multisite, randomized, double-blind, controlled Phase 3 clinical trial of the drug sirolimus for inclusion body myositis (IBM). Dimachkie serves as the U.S. sponsor and co-coordinating principal investigator on the study aimed at investigating if the drug improves the lives of people with IBM. When the trial launches later this year, it will likely be the only ongoing randomized controlled study for IBM.

“If, during this clinical trial, we find that sirolimus slows disease progression, this would be a great advancement in the care of people with IBM,” he said.

About IMACS

IMACS is made up of health care professionals in a variety of specialties such as rheumatology, neurology, pulmonary, dermatology, cardiology and rehabilitation medicine who are focused on myositis including:

• Clinical and basic researchers
• Physicians
• Physical and occupational therapists
• Patient support group leaders
• Pharmaceutical representatives

The organization received Global Genes’ RARE Champions of Hope Award for Research Collaboration in 2019 for its multidisciplinary and international collaborative efforts accomplishments.