Myositis Association to honor advocacy, research and care leaders at MyoCon 2026

The Myositis Association will present its 2026 Heroes in the Fight awards Sept. 26 in St. Louis during MyoCon 2026, its annual global patient conference. The honorees include Father Stuart Long, researcher Conrad Weihl, the Hospital for Special Surgery Myositis Center and longtime volunteer Catherine Trejo.

Why it matters: - The awards spotlight people and institutions shaping care, research and support for myositis, a rare group of diseases that affects patients, families and clinicians worldwide. - The recognition also underscores the role of patient advocacy, specialized clinics and community support in improving quality of life and advancing treatment.

What happened: - The Myositis Association will present its 2026 Heroes in the Fight awards at a celebratory gala on Sept. 26 in St. Louis. - The ceremony is part of MyoCon 2026, the organization’s annual Global Myositis Patient Conference, running Sept. 24–27 in St. Louis. - The conference brings together hundreds of people with myositis, care partners, clinicians and researchers from around the world. - Father Stuart Long will receive the Patient Ambassador Award posthumously. - Conrad (Chris) Weihl, MD, PhD, will receive the Heroes in Research Award. - The Hospital for Special Surgery Scleroderma, Vasculitis and Myositis Center will receive the Heroes in Healthcare Award. - Catherine (Kitty) Trejo will receive the Marianne Moyer Myositis Leader Award.

The details: - Father Stuart Long, known as Father Stu, is being recognized for the lasting impact his life and story have had on awareness of inclusion body myositis, or IBM. - Long was the focus of the 2022 Sony Pictures film Father Stu, with Mark Wahlberg portraying him. - Long was an American boxer, college football player and former agnostic who later converted to Catholicism and became a priest for the Diocese of Helena, Montana. - Long died in 2014 from complications of IBM. - The award for Long will be accepted by Father Bart Tolleson, author of That Was Father Stu: A Memoir of My Priestly Brother and Friend. - Members of Long’s family and Montana parishioners will join the tribute at MyoCon 2026. - Past Patient Ambassador Award recipients include U.S. Olympian and beach volleyball professional Tri Bourne, supermodel Karen Alexander and Grammy-winning musician Peter Frampton. - Weihl is a professor of neurology, head of the neuromuscular section and director of the Muscular Dystrophy Association Clinic at Washington University School of Medicine in St. Louis. - Weihl’s work focuses heavily on IBM, the most common acquired muscle disease in people over age 50 and one of the hardest forms of myositis to treat. - Weihl recently established a clinic devoted to people living with IBM. - The clinic combines multidisciplinary care for the physical, functional and emotional challenges of IBM and creates opportunities for patients to take part in research. - Weihl is a past chair of TMA’s Medical Advisory Board and received a TMA research grant in 2013. - Weihl also serves as editor-in-chief of Neuromuscular Disorders, the official journal of the World Muscle Society. - The Hospital for Special Surgery center in New York City has built a nationally recognized program that combines clinical expertise, research and patient support services. - HSS founded the Myositis Support Group in 1997, and the group remains a resource for education, encouragement and community. - David R. Fernandez, MD, PhD, and Suzan Fischbein, LCSW, will accept the HSS award. - Trejo co-founded the TMA NorCal Support Group with Rich Stevenson in 2001. - Trejo also serves as co-leader of the TMA Rainbow Affinity Group. - Trejo lives with polymyositis and has volunteered with TMA for more than two decades. - The Marianne Moyer Myositis Leader Award honors volunteers who help others in the myositis community. - Marianne Moyer helped TMA create Keep In Touch groups, mentored emerging support and affinity groups and served as chair of TMA’s Board of Directors. - The awards celebration begins at 6 p.m. CDT on Saturday, Sept. 26, at the Hyatt Regency St. Louis at the Arch. - Media inquiries and press pass requests go to media@myositis.org. - Sponsors include argenx, Abcuro, AstraZeneca, Bristol Myers Squibb, Johnson & Johnson, Octapharma and Priovant. - argenx is the lead sponsor for TMA’s Patient Ambassador Award. - TMA describes itself as the leading nonprofit organization dedicated to improving the lives of people affected by myositis through education, support, advocacy and research. - More information is available at The Myositis Association. - TMA also listed social media channels on LinkedIn, Instagram, Facebook, YouTube and X.

Between the lines: - The honorees reflect TMA’s emphasis on both scientific progress and lived experience. - The mix of a patient story, a physician-researcher, a specialty center and a volunteer leader suggests the organization sees myositis care as a team effort across medicine, research and community support. - The prominence of IBM in the awards points to the need for more targeted care and more treatment options for a disease that remains difficult to manage.

What's next: - TMA will recognize the honorees during the Sept. 26 gala in St. Louis. - MyoCon 2026 continues through Sept. 27 with patient, caregiver and researcher programming. - The IBM clinic model highlighted in the awards may offer a template for future specialized care and research participation.

The bottom line: - TMA is using MyoCon 2026 to elevate the people and programs driving progress in myositis, from bedside care to research to community support.