TMA recently returned from a high-profile week in Pittsburgh, Pennsylvania at the Global Conference on Myositis (GCOM)! Along with the almost 400 attendees for the scientific program, TMA helped lead a group of twelve worldwide patient advocacy organizations (PAOs) facilitating international collaborative efforts that included networking, sharing best practices, and brainstorming solutions to common issues. Here are some of the significant takeaways from this important biannual gathering.
Patient-Centered Programming
With a special Patient/Patient Advocate registration category, TMA’s efforts supported a parallel program for PAOs that featured nine PAO posters and representation from ten countries, both in person and virtually. Our parallel program was a highlight of the week for all of us, as we brainstormed about national research agendas, with inspiration from the Netherlands; consumer panels in research, with inspiration from the Myositis Association of Australia; and World Myositis Day, with inspiration from the German Myositis Group.
Highlights from the patient contributions to the scientific program included a Meet the Patient Experts panel, featuring six patient experts sharing about their disease, and a session on Patient-Centered Research Collaborations with case studies from Cure JM Foundation, InspireNMD from the Netherlands, Myositis UK, and Myositis Support and Understanding.
We are grateful to the TMA leaders who joined us in Pittsburgh, including TMA Board members Martha Arnold, Mustafa Shameem, Tahseen Mozzafar, MD, and Iazsmin Bauer Ventura, MD; chair of TMA’s Medical Advisory Board, Namita Goyal, MD; and Nancy Marx Erickson who leads TMA’s Women with IBM Affinity Group.
Research and Posters
TMA was well represented by presentations from current and former members of our Medical Advisory Board. Dr. Merrilee Needham and Dr. Adam Schiffenbauer, for example, moderated a set of sessions about environmental and genetic risk factors associated with myositis. Dr. Robert Hallowell talked about “When ILD goes bad,” and Dr. Elie Naddaf presented on diseases that mimic IBM.
Many investigators who collaborated with TMA or received research grant funding from TMA also presented posters, including Dr. Lisa Christopher-Stine, Dr. Cheilonda Johnson, Dr. Chiseko Ikanaga, and Dr. Begum Horulouglu.
One poster, “Improved physical function using a power enhancing glove in persons with IBM,” presented by TMA medical advisor Malin Regardt, PhD, described a study conducted during TMA’s 2023 International Annual Patient Conference (IAPC). Read about the outcomes of this successful study that showed people with IBM were able to perform activities, such as lifting objects, grocery shopping, and stabilizing the hand, more independently when using Carbonhand as an assistive device.
TMA also presented a poster summarizing our impact: “Advancing research, supporting patients, and raising awareness of myositis: Representing the entire myositis community worldwide since 1993.” And we participated in a joint poster about “Patient impact on myositis research” with twelve other patient advocacy organizations from around the world.
