Who is MSU?
We’re a 501(c)(3) nonprofit
In an attempt to find others who had been diagnosed with Polymyositis, founder Jerry Williams started a small Facebook support group. His aspirations were soon realized when the small group had evolved into an enthusiastic organization called Myositis Support and Understanding. MSU continued to grow and received its incorporation and nonprofit status designations in 2015.
Knowledge in Action
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.
We work for and with you because we are you
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!
How does MSU help?
- MSU provides 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 assists patients in advocating for themselves with insurance companies and legislators; as well as providing educational materials to policy makers about the importance of access to appropriate treatments.