The MSU Story

We continue to build relationships with other members in our groups

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

  • UnderstandingMyositis.org – a comprehensive, easy-to-navigate website which promotes awareness, education, and advocacy and provides a variety of information for patients, caregivers, family, friends, co-workers, medical professionals, and anyone who is interested in learning about Myositis.

    The site features the “Simply Put” series, which interprets medical and technical information into easy-to-understand terms, links to helpful organizations, patient stories, and the MSU blog.

  • A public Myositis Support and Understanding Facebook Page, which focuses on information about Myositis and related diseases, which can be accessed by everyone who is interested in the disease.
  • As mentioned above, a closed Myositis Support and Understanding Facebook group, known as the “home” group, for all patients diagnosed with a type of Myositis, and also their caregiver.
  • A closed Inclusion Body Myositis Support and Understanding Facebook group for patients with IBM, and their caregiver, so they may share their own experiences coping with that form of Myositis.
  • A closed Myositis Support and Understanding Family & Friends Facebook group to provide a forum for people who have acquaintances and loved ones with Myositis. MSU understands that Myositis is a complicated disease that is difficult to understand and reaches far beyond the patient. This group offers a platform for non-patients to privately voice their concerns and experiences.
  • MSU is well represented on all major social networks including: Tumblr, Twitter, Pinterest, Google Plus, Instagram, YouTube, and Flickr.

© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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