ICYMI: We at the MGA hosted our 62nd Annual Meeting & Educational Seminar was held this past Saturday and boy was it a showstopper! With over 240 registrants, we had audience members tuning in from coast to coast and 9 different countries. Leading the presentation was keynote speaker Dr. James “Chip” Howard. Many of you are probably familiar with Dr. Howard but for those who are not, Dr. Howard is a Professor of Neurology, Medicine and Allied Health in the Department of Neurology at The University of North Carolina at Chapel Hill School of Medicine. Dr. Howard is a practicing neurologist for over 43 years with a focus on myasthenia gravis and EMG. He currently directs the Myasthenia Gravis Clinical Trials and Translational Research Unit at UNC.
Our 62nd Annual Meeting was centered around the emerging therapeutics of myasthenia gravis. Dr. Howard kicked off the meeting with a comprehensive review of the current FDA-approved treatments of MG including eculizumab, efgartigimod, and ravulizumab, in addition to the other drugs that, while FDA-approved, are utilized in an off-label fashion to treat MG. The heart of the meeting, however, was dedicated to the newest investigational treatments for myasthenia gravis. Dr. Howard educated us on the research and drug development of therapies including Batoclimab, Descartes-08, Inebilizumab, Nipocalimab, Rozanolixizumab, and Zilucoplan.
Perhaps what was most compelling about Dr. Howard’s presentation was the emphasis he placed on the patient experience and the unmet needs that still exist for the myasthenia gravis community. To initiate this discussion, Dr. Howard cited an article published in the Journal of the America Academy of Neurology titled, “People With Myasthenia Are Getting Better, But Are They Doing Well?” From the tolerability and the toxicity of drugs to the psychosocial implications of MG such as employment and social functioning, it is evident there is still work to be done for the MG population. Additional issues seen in the MG community were reiterated such as the side effect profile of drugs, the length of time it takes for a patient to see the full therapeutic effect of a drug, and logistical barriers to care such as transportation to/frequency of infusion appointments. To sum it up nicely, Dr. Howard stated, “Myasthenia management is not a cookbook. It’s tailored to the individual, their pattern of weakness, the rapidity of which the weakness occurred, their comorbidities, and unfortunately in the U.S., their financial wherewithal.”
Following Dr. Howard’s presentation was a Q&A moderated by Dr. Mazen Dimachkie. Dr. Dimachkie is ABPN board-certified in Neurology, Clinical Neurophysiology, and Neuromuscular Medicine and holds a UCNS certificate in Clinical Neuromuscular Pathology. He is a fellow of both the American Academy of Neurology and of the American Neurological Association. He is currently Professor of Neurology, director of the Neuromuscular Division at the KUMC, and director of the Neuromuscular Medicine Fellowship. He is also Executive Vice Chairman of the Neurology Department & Vice Chairman for Research Programs.
Sprinkled throughout the seminar we heard from our wonderful partners including argenx, Alexion, Immunovant, UCB, Janssen, ARJ Infusion Services/Promptcare, and Catalyst Pharmaceuticals. We want to give a huge shout out to Distinctive Meeting Group for their support in pulling off the meeting as well. Thank you to all of our sponsors and partnering organizations for continuing to support patients with myasthenia gravis!
To close our seminar, we presented our annual awards to very deserving community members. Awards were granted to:
Sandy & Gary Gardner | Joan Stackhouse Award
Keith Asaeli | Volunteer of the Year Award
Dr. John Sand | Diana Wilmoth Sunflower Award
Needless to say, the 62nd Annual Meeting & Educational Seminar was one to be remembered. We got to hear from two, world-renowned experts in myasthenia gravis as well as changemakers in the pharmaceutical industry. These past couple of years in the myasthenia gravis community have been historic and we are so fortunate to be participants in the making of that history.
We look forward to seeing you next year and again, thank you to all of those who made this event possible. If you missed the Annual Meeting, you can view it on our YouTube Channel here.
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