By Nancy Marx Erickson

TMA recently participated in the Global Conference on Myositis (GCOM) in Pittsburgh, Pennsylvania. We are grateful for Nancy’s reflections on her experiences at this international gathering of the world’s most important myositis experts. Read about other TMA GCOM successes here.

I have inclusion body myositis, one of the various forms of myositis. Those of us who live with this rare disease are a special club. Being a member of this “club,” my way of giving back is to advocate and educate.

I was excited, therefore, to attend the 5th Global Conference on Myositis (GCOM) as a founder and moderator of TMA’s Women with IBM Affinity Group, one of several monthly international virtual programs offered by TMA. I saw my attendance at this scientific conference held in Pittsburgh not only as a way of furthering my understanding about the disease but as an opportunity to meet potential speakers for our group’s monthly virtual programs.

GCOM allowed me to meet in person myositis experts like Helene Alexanderson, PhD, a physical therapy researcher at the Karolinska Institute in Sweden. She is renowned around the world for her work proving the therapeutic benefits of exercise for those of us with myositis, especially for IBM.

The conference also permitted me to meet face-to-face with the Australian researchers and physical therapists who have often shared their expertise in treating those of us with myositis on our virtual program. Among these experts was Genevieve Simkovics, a researcher with Fiona Stanley Hospital’s Department of Neurology in Murdoch, Australia. Dr. Simkovics is scheduled to speak on her research related to incontinence and IBM at TMA’s Women with IBM Affinity Group on April 16.

It was also a joy to meet the brilliant clinicians and researchers from Johns Hopkins Myositis Center. I feel very fortunate that this is the team of physicians who treat me as a patient.

I have been told that since myositis is such a rare disease affecting so few people worldwide, finding a cure might take some time. They say not enough attention is being given to myositis by brilliant physicians and academic scientists because we are such a small community. What I discovered attending GCOM was quite the contrary. Because the brilliant myositis experts in all medical disciplines who are moving the needle on understanding these diseases are relatively few worldwide, they have banded together, cooperating, collaborating, and enthusiastically sharing their research and insights.

I was also pleased to discover that these brilliant physicians and researchers are aware that they need those of us who live with these diseases as much as we need them. This was dramatically exemplified during sessions presented by a collaborative group of patient advocacy organizations from around the world. In one of these sessions, titled Meet the Patient Experts, TMA Board member Martha Arnold and five other patients discussed their experience of living with myositis. That session impressed upon this gathering of researchers and clinicians the importance of ensuring the patient’s voice is heard within all areas of care and research, government agencies, pharmaceutical companies, and philanthropic foundations.

During the conference I was also pleased to interact with visitors at TMA’s exhibit booth. Together with Paula Eichenbrenner, TMA’s Executive Director, we shared the value of TMA for both patients and providers, discussing our programs, services, and advocacy. Paula is a hard worker and a joy to be around.

And finally, one of the most valuable things I learned was that designing targeted therapies appears to offer much hope for future improved treatment and ultimately a cure. Researchers are hard at work worldwide gathering and attempting to integrate data on the causes of various types of myositis to create protocols to take advantage of the rapid development of artificial intelligence. Ultimately this work will greatly enhance quality of life for so many of us who live with myositis.

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