Myositis Support and Understanding Association, Inc. (MSU)

Myositis Support and Understanding (MSU) is a patient-led, all-volunteer 501(c)(3) nonprofit organization dedicated to improving the lives of and empowering those fighting myositis through education, support, awareness, advocacy, financial assistance, and access to research. MSU was founded by myositis patients for myositis patients and caregivers, initially as a small Facebook support group. Realizing the unmet needs in the myositis community, we took action, and in 2015 we officially became a nonprofit organization. We provide critical financial assistance for myositis patients including aid for mobility/assistive devices, medical bills, household expenses, and medical travel to see one of the few myositis experts. We collaborate with other myositis and rare disease organizations, pharmaceutical companies, and other unique partners to help promote treatment innovations and research with our collective eyes on a cure. Our focus will include patient-led research initiatives, like The Pain Project, and more on patient-reported outcome measures. We give myositis patients and caregivers a platform to use their voices! #MyositisLIFE, a program of MSU, is a community-based and interactive platform where contributing authors - no matter the level of writing experience - share stories, short videos, photos, and memes that show what life with myositis is like. While we are not defined by myositis, it does affect every aspect of our lives, making it difficult for family members and friends to understand some aspects. Visit MyositisLIFE.org Caring, empowering and educational support will always be a top priority at MSU. The Myositis Support Community, a partnership with Inspire, provides just that and a great way to connect. We also have a live video support program that brings myositis patients and caregivers from across the world closer together. Learn more about MSU and myositis on our comprehensive myositis website UnderstandingMyositis.