The myositis community mourns the loss of James “Jim” Mathews of Grand Haven, Michigan, who passed away on February 5, 2026, surrounded by his loving wife, Cathy, and six children.
Jim lived with inclusion body myositis (IBM) for more than a decade, and like so many who find themselves navigating a rare disease, he transformed his own experience into a mission to help others navigate theirs.
An avid tennis player, when muscle weakness started slowing his game, he attributed it to age and bad knees. After years of searching for answers, though, a new physician recognized the pattern and referred him to a neurologist where the pieces finally came together. Once he had a name for what he was facing, Jim did what he had always done: he sought out information.
A pharmacist by training, Jim immersed himself in research. That drive for understanding led him to The Myositis Association (TMA), where he joined the community forum, watched conference videos, and eagerly awaited the chance to attend the next national conference in person. When he finally did, it was transformative. Surrounded by leading myositis experts, he described the experience as “like a kid in a candy store,” grateful for the opportunity to ask questions and revisit complex talks at his own pace.
Jim’s ability to translate complex information into accessible language made him a natural educator—a skill he brought with him to TMA. He joined the Board of Directors in 2017, saying, “I want to be involved. I want to help wherever I can… I want to learn as much as I can.” He believed deeply in the mission of TMA and worked to strengthen the organization that had supported him and was proud to have served as chair of the Board of Directors.
Beyond his advocacy, Jim was supported by his faith and devotion to his family. He and his wife Cathy were married for 56 years, he was the proud father of six children and, if given half a chance, he would regale listeners about his 36 amazing grandchildren and one great grandchild. His family, all of whom lived within a mile of him, was his anchor and his greatest joy.
Jim understood the realities of IBM, but he faced them with courage, honesty, and grace. We honor Jim Mathews for the life he lived, the people he lifted up, and the community he strengthened. TMA is a stronger organization because of his leadership.
My heartfelt condolences and prayers go out to the Mathews family. Jim was one of the very first people with IBM I met at the 2017 Myositis Conference in San Diego. He invited me to join him for a beer at the bar, and we ended up talking about all kinds of things. He was fascinating to listen to—deeply knowledgeable about IBM and generous with his insights.
That conversation sparked a friendship that has lasted ever since. We talked about everything: family, music, sports, and the realities of living with the disease we shared. Jim became a mentor to me—someone I could confide in, someone whose advice I trusted. He was always a positive, optimistic voice, helping me understand what might lie ahead as we navigated the Myositis world together.
I will truly miss our periodic conversations. I like to imagine Jim now—playing tennis, running, strumming his guitar, and enjoying the company of family and friends who welcomed him through the pearly gates.
Rest in peace, my friend.