The MSU Story
After several years of trying to cope with Polymyositis and finding little information or support, Jerry Williams started a Facebook support group called “Polymyowhat?: Understanding Myositis” in 2010.
The group proved to be helpful connecting people who shared a Polymyositis diagnosis and even attracted people with other forms of Myositis who shared the same issues and treatment types. Believing that the group name appeared to be too limiting, the name was changed to Myositis Support and Understanding.
It was also becoming more and more clear that Myositis patients needed this interaction to cope with the disease, treatments, complications, and emotions. Members needed help navigating medical literature and interpreting their doctor’s advice, and they also needed compassion and support from people who understood all aspects of living with the disease because of their own personal experiences.
In order to expand the reach and philosophy of the group, and to grow into a multi-aspect organization which focused on living with Myositis, Jerry enlisted a few members who shared his passion, compassion, and desire to help fellow patients and caregivers in assisting and facilitating the group while growing an organization.
With a team in place, the Myositis Support and Understanding Facebook group, now referred to as the “home” group, grew from about 300 members in early 2014, to more than 1,500 two years later. In spite of the growth, the same safe, loving, and caring support system has been maintained. It remains a family-type atmosphere where members can share victories and defeats; laugh and cry.
Since 2014, MSU has continued to expand the scope of the organization to include a variety of platforms to support those impacted by Myositis including