Who is MSU?

Myositis Support and Understanding Association (MSU) is an all-volunteer, patient-centered 501(c)(3) nonprofit organization founded by myositis patients for myositis patients and caregivers. MSU is the leading support network for myositis patients, their caregivers, family members, and friends.

Even though people living with the forms of the rare disease myositis are diverse and far-stretched across the globe, MSU provides various global communities and platforms for them to come together to share information on the effects, commonalities, and complexities of myositis to help empower each other. Through individual trial and error, similar experiences, and empathy for each other, MSU is continuing to build a supportive and informational network of camaraderie in which people can better understand their disease, effectively advocate for themselves, and realize they do not have to be alone in their struggles.

MSU is the leading support network for myositis patients, their caregivers, family members, and friends.

MSU, founded in 2015, is a fast-growing U.S. based myositis nonprofit that provides education, support, advocacy, awareness, clinical trial matching, access to research, and need-based financial assistance for patients. Partnering with like-minded organizations, and continuing to build relationships with researchers, MSU is helping to lead the effort to find effective, affordable, and safe therapies for all forms of myositis. Working together with the pharmaceutical industry in a straightforward and transparent approach is key to this endeavor.

MSU’s board consists of real patients with Myositis, so we are able to fully understand what other patients go through. Our knowledge of Myositis, among its various treatments, complications, hardships and struggles give us a powerful base from which to formulate action plans. We are a tight-knit group that supports each other and others in our community.

Our drive to support and help one another motivates us to help other patients in any way we can. Through education, online support groups, video chats, and our financial assistance program, we are able to put our knowledge into action and truly do all that we can to assist and encourage those with Myositis.

MSU is an organization which is operated by volunteers who understand Myositis on a very personal level. As patients with Myositis, we, too, experience the frustration of living with this disease which is rare and treatments which are harsh.

We understand that our medical team is extremely important to us, but that they have no way to truly understand what it is really like to live with our rare and complicated disease. So we lean on each other and learn from each other through our support groups, our website, and our nonprofit organization.

We continue to harness enthusiasm and determination focusing on educating each other, our friends and families, and the medical profession. Utilizing the energy we create working with each other to be a valuable force to the understanding and advocacy of these diseases and to provide assistance and support to people with Myositis.

The future of Myositis is bright, as is our future as an organization. We will post updates as we work towards our goals. We appreciate your support!

• MSU provides educational materials for patients to take to doctors who may have never encountered myositis before in their careers, other than in a medical school textbook.
• MSU provides online patient support groups in which myositis patients and caregivers are free to share their fears, symptoms, and experiences honestly and openly – with the opportunity to get feedback, advice, and encouragement – knowing that they are not alone in their struggles.
• MSU provides financial assistance to myositis patients for medical and household expenses related to the costs of living with the disease and the financial devastation caused by interruption of the ability to work. We also offer travel assistance to visit a physician who has experience diagnosing and treating myositis.
• MSU offers a clinical trial matching program to help myositis patients find clinical trials for which they may be eligible.
• MSU partners with researchers, academia, and pharmaceutical companies in clinical stage research stages to help with patient recruitment, education, and more.
• MSU assists patients in advocating for themselves with insurance companies and legislators; as well as providing educational materials to policymakers about the importance of access to appropriate treatments.

MSU is instrumental in helping to improve the lives of patients fighting this rare, complicated, immune-mediated muscle, skin, and often multi-organ disease by being the very first patient-centered organization to offer live, online video patient support and education sessions that simply make sense for those living with a muscle disease that involves limited mobility and with patients spread across the world.

MSU also provides a “Simply Put” education series, offers clinical trial matching, advocacy, several online support options, awareness building programs, and need-based financial assistance for patients.