Myositis Association

Research Grants: TMA aims to identify the underlying causes and natural progression of myositis, develop better treatments and more effective therapies, and ultimately to arrive at cures for this collection of disabling diseases. Through our research program, we progress toward a world without myositis. Twelve TMA grants were active in 2024. We continued our research fellowship program to attract and encourage post-doctoral trainees (PhD and MD) and early-career physicians to pursue careers in the field of myositis research, and funded innovative pilot projects. From 2002 to 2024, TMA has awarded 68 research grants totaling nearly $8 million. Two new projects were approved in 2024: "Senolytic therapies in a novel patient-derived myoblast model of inclusion body myositis and Mitochondrial contribution to juvenile dermatomyositis." The grants portfolio is designed to advance our collective understanding of inclusion body myositis, dermatomyositis, necrotizing myopathy, polymyositis, and all forms of myositis. Scientists, practicing physicians, and other medical professionals have supported TMA through our active Medical Advisory Board. This group provides medical information to staff and patients, and guides the TMA research program.

Other Program Services: TMA's other initiatives are focused on awareness, advocacy, and clinician outreach. We are continually updating approximately 13,000 members through monthly e-newsletters, quarterly magazines, videos on YouTube, social media channels, and the highly trafficked website myositis.org. Our efforts to elevate the understanding of myositis among the general public are very important. Because these diseases are very rare, advocacy on behalf of the families affected by myositis is a core component of our mission. In 2024, we organized Myositis Awareness Month from May 1-31, 2024 and we participated in World Myositis Day on September 21, 2024. TMA also provides resources for healthcare professionals, to ensure that they receive the latest information on treating myositis and communicating effectively with their patients. We publish various resources, including our "Myositis 101" physician booklets, disease overview brochures, and infographics. In 2024, we hosted a myositis research symposium for physicians and experts during our Global Myositis Patient Conference; we co-hosted an Externally-Led Patient-Focused Drug Development meeting with regulatory decision-makers and MSU; and we co-hosted a summit featuring "Recent Advances in Myositis Research and Treatment" with the Cure Juvenile Myositis (JM) Foundation.

Patient Support and Education: TMA's Support Groups offer members the chance to share their feelings and discuss their concerns with people in similar situations. These groups, which are offered in-person and virtually, encourage an atmosphere of communication and compassion. TMA also administers Affinity Groups with outreach targeted toward supporting and extending our organization's reach into new communities. Through Affinity Groups, TMA brings together of people who have commonality such as Military Veterans, Women with IBM, Women of Color, Care Partners, and more. TMA's 36 regional Support Groups and 8 virtual Affinity Groups welcomed nearly 4,000 patients and care partners to group meetings in 2024. TMA's educational efforts, especially those organized during Myositis Awareness Month and World Myositis Day, create broader community awareness, direct our members to TMA offerings and resources, educate around patient and disease advocacy, share clinical insights, and build a stronger and more connected myositis community. TMA resources share information on diagnosis, treatments, research news, and other relevant topics that help patients and care partners learn what they need to address their individual health care concerns. TMA additionally hosts webinars year-round, including our monthly Ask the Expert series as well as Research Insights, Empowerment Clinic, and Awareness Clinic offerings. 1,399 registrants participated in TMA's virtual programs in 2024.