By Martha Arnold
TMA recently participated in the Global Conference on Myositis (GCOM) in Pittsburgh, Pennsylvania. Martha Arnold attended the conference as a member of TMA’s Board of Directors. We are grateful for her reflections on this international gathering of the world’s most important myositis experts. Read about other TMA GCOM successes here.
When I first decided to attend the Global Conference on Myositis (GCOM) in Pittsburgh, I was concerned that I’d be disappointed and would leave disheartened at the state of research for myositis diseases. Was I ever wrong!
From the very first scientific session, I was both amazed and gratified at the number of researchers and clinicians who were in attendance—more than 370 in person and an additional 60 participating online. Just walking into the main meeting room and seeing so many scientists and knowing that they were all there because of their passion for their work in myositis, was both inspiring and reassuring.
More than 170 scientific posters were presented in three one-hour sessions over the course of the conference where the authors were available to discuss their projects with other GCOM attendees. Everyone was very interested in sharing their work with other scientists, explaining their findings, answering questions, and importantly, discussing what was learned and how it leads to new directions for investigation. It’s from these informal discussions at GCOM and elsewhere that new ideas are generated and collaborations for future research are born.
Attendees represented all the clinical areas we associate with myositis diseases: rheumatology, dermatology, neurology, immunology, pulmonology, genetics, physical, occupational, and speech therapy, and others. In addition, there were many scientists who are doing basic science work on the pathological pathways that drive our diseases and may unlock potential avenues for therapies. GCOM is an important meeting for them to be able to network with other scientists and form new collaborations.
The scientific program was packed with end-to-end meetings every day from 9 am through 6 pm or later. Such a duration was necessary to cover the many recent developments. As a person living with IBM, I was particularly interested and impressed by the presentations made during the first afternoon’s IBM session. Dr. Merilee Needham from the Perron Institute in Perth, Australia gave an exceptionally well-done review of the Current State of IBM (in 20 minutes!) that highlighted the work going on to approach IBM from four different angles: muscle wasting and atrophy, muscle inflammation, protein accumulation, and mitochondrial changes.
It was also reassuring to see so many researchers attending who either are currently being funded by research grants from TMA or who have received funding from TMA in the past. Many of these attendees had podium presentations during the conference and either are now or have been members of TMA’s Medical Advisory Board.
The list is impressive and, at the risk of inadvertently missing someone, I’m happy to recognize: Rohit Aggarwal, Yves Allenbach, Helene Alexanderson, Lisa Christopher-Stine, Mazen Dmachkie, Stephen Greenberg, Begum Horuluoglu, Cheilonda Johnson, Takayuki Kishi, Janine Lamb, Thomas Lloyd, Ingrid Lundberg, Fred Miller, Melissa Morales, Tahseen Mozaffar, Merilee Needham, Alexander Oldroyd, Joanna Parkes, Iago Pinal-Fernandez, Malin Regardt, Jens Schmidt, Sarah Tansley, Victoria Werth, Conrad Wiehl, and Erin Wilfong.
GCOM has been held biannually since 2015. This meeting was a very jam-packed three-and-a-half-days. I’m looking forward to the continuing progress until there’s so much information to be shared that the meeting will need to be held annually.
Amazing isn’t it? Indeed I had a similar WOW moment when I attended my first GCOM in Berlin in 2019, I could not believe the amount of ongoing research and the number of scientists and clinicians from all over the world all interested in the disease we have! I was very touched by all the efforts and vowed that I would never miss another GCOM for as long as I live! So hopefully many more to come!!!
So, what was the outcome and conclusions reached by those who made presentations at the conference?
Ron, there were dozens of presentations by myositis experts from around the world at GCOM 2024. We will discuss some of these presentations at our International Annual Patient Conference in September 6-8 in Baltimore at a session we’re calling The Best of GCOM.
Thank you for the very informative post. As an IBM person, I sometimes feel there are so few of us per population base, one can feel very discouraged that one feels little hope. My first symptoms were in 2009. I was finally firmly diagnosed at Mayo Clinic in Scottsdale, AZ. Since my permanent home was on a large island in SE AK, my clinical visits were usually during the winter months as I was a commercial fisherman and summer was a time I needed to be making a living on the ocean. It is great to know that there is a a great number of scientists working on solutions for myositis.
my diagnosis was in December, 2015
Robert, I also have IBM. My symptoms started in 2007 with swallowing issues that progressed very slowly. I finally got diagnosed in Feb 2022. I went for clinical trial screening in Kansas City last May, passed all screening but couldn’t swallow the large capsule. I just recently started a new clinical trial in Chicago and had 1st injection last week. Don’t lose hope! I may be getting placebo but if I don’t care if it will help others in the future!