By Martha Arnold
People come to The Myositis Association’s annual patient conference for many reasons. Let me share two that explain my consistent attendance over the last eight years.
Science – Having worked for 30 plus years in the life sciences industry, I’ve always been interested in the latest developments in our diseases. This is particularly important for me in my role in helping to start up the Cure IBM Research Fund at TMA. TMA will soon announce two $100K plus grant awards—underwritten by this new research fund that was created by individuals living with IBM—to scientists studying the early stages of IBM at a cellular and molecular level. I’ve had the opportunity to participate in the review and selection of those grants, and the presentations at MyoCon in St. Louis and previous conferences have helped me understand the types of work and the objectives of those research proposals.
A highlight of this year’s conference was an excursion to Washington University for a tour of Dr. Chris Weihl’s laboratory and a very interesting and very visual presentation on the histology of myositis.
People – While there are many people who come to MyoCon for the first time (about half of all attendees), there is also a group of people with whom I reconnect every year. We discuss our diseases, but perhaps more importantly, we share how we are managing. I always learn something new in these conversations, and I do my best to pass these tips on to others.
Let me share a story – At the conference in Minneapolis in 2019, a fellow IBMer, Ed Horack, talked about a golf glove with a lock-in strap to support your grip, allowing those of us with hand weakness play golf safely (and avoid letting go of the club during the swing.) Although I was not a golfer at the time, several years later, I tried it out and found that it gave me enough function and confidence to actually start playing golf, which I’ve done for the past four years. In a casual conversation in St. Louis this year, I introduced this aid to Toni Shulte, an IBMer who had thought her golf-playing days were over. She ordered a glove and is hoping it will allow her to return to golf! (As an aside, both Ed and I have scored holes in one with this glove. Miracles do happen!)
I’ve found that it all comes together at MyoCon!
Martha Arnold previously served on TMA’s Board of Directors and is a Founding Member of the Cure IBM Research Fund at TMA. She has a background in marketing and regulatory communications within the pharmaceutical industry and was diagnosed with inclusion body myositis in November 2014.
