Myositis Support and Understanding Association (MSU)
Empowering the Myositis Community
Myositis Support and Understanding Association (MSU), founded by Jerry Williams, a patient with polymyositis, was created after identifying a need for more patient-focused programs and services. MSU is an all-volunteer, patient-centered 501(c)(3) nonprofit organization supporting patients and caregivers affected by the Inflammatory Myopathies, which include dermatomyositis, polymyositis, necrotizing autoimmune myopathy, and inclusion body myositis, along with the juvenile forms of dermato- and polymyositis.
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, online support groups, awareness building programs, and need-based financial assistance for patients.
A 501(c)(3) nonprofit
After much hard work and support from our group members, Myositis Support and Understanding decided it was time to reach toward the goal Jerry Williams had originally set when he started the first Facebook group, Polymyowhat. After raising funds to cover the costs, we officially became incorporated on May 13, 2015 and we were approved as a 501(c)(3) nonprofit organization in July 2015.
We work for and with you
We are a fast-growing organization with a ton of enthusiasm, determination, and willingness to do what is needed to help promote Myositis awareness, offer education for both patients and physicians, and to achieve objectives we are currently forming. 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!
The MSU Mission
Myositis Support and Understanding (MSU) is dedicated to improving the lives of Myositis patients through public policy, self-advocacy programs, need-based financial assistance for medical-related expenses, and to provide support and education to patients, caregivers, healthcare providers, the general public, and legislators about Myositis.
MSU will foster direct involvement with other Myositis organizations to help promote treatment innovation and research with our collective eyes on a cure and provide financial support to organizations that share similar visions.
(Mission and Vision Statements revised on November 20, 2015 to include Advocacy)
The MSU Vision
Our Vision is to improve the lives and care of Myositis patients and their families through education, awareness, support, and advocacy. Through these avenues we will assist Myositis patients and their healthcare providers in obtaining proper, expeditious diagnoses and swift implementation of effective treatment plans. MSU will strive to provide:
- Independent, interactive online support platforms to connect patients, caregivers, healthcare professionals, and family members,
- Educational resources for patients and their families, caregivers, and the healthcare community,
- Need-based financial support for medical-related expenses,
- Information-based advocacy with all levels of policy-makers, insurance companies, and other medical service decision-makers, and
- A portion of revenue as contributions to other Myositis-centered organizations to help promote research and treatment innovations.
Learn how Myositis Support and Understanding came to be
After several years coping with a Polymyositis diagnosis and finding little information or support, Jerry Williams started a closed Facebook support group “Polymyowhat?: Understanding Myositis” in 2010. After a few years and little activity, it became apparent that the name of the group, “Polymyowhat,” was a deterrent to those with other forms of myositis. Facebook group policies do not allow for a simple name change, nor did Jerry feel he had the time to put into the group alone. This was the tipping point of Jerry’s new-found determination to help others living with Myositis and to educate family and friends.
Late 2013, Jerry enlisted the help of Kate Rossi Stuart, who became the first administrator for Polymyowhat. Kate was instrumental in helping build the group’s membership and together, Jerry and Kate created a safe, loving and caring support system for Myositis patients and their caregivers, as well as a place to laugh and cry. However, they realized a name change was necessary in order to continue providing support to the Myositis community as a whole.
In January 2014 the group name officially changed to Myositis Support and Understanding and the group became live on February 1, 2014. The group’s name change, indeed, helped build the group membership, but it also opened up new opportunities for growth, outreach and the start of an organization.
It was at the same time as the name change that the idea of the organization became a reality. As the group began to grow, Jerry decided he needed someone on the team who shared the same values, goals and determination in order to accomplish and build upon what he had started. Sandy Morgan Block, former Vice President, was added as a group administrator and has been instrumental in helping to build a strong foundation for Myositis Support and Understanding to continue its growth. Research, education and advocacy have been Sandy’s focus since joining forces with MSU, and she continues to help build relationships within the Myositis community that will open doors for the organization. As part of her role, Sandy is continually engaging the group members with her warm, fun loving-spirit and educational pizazz.
Myositis Support and Understanding began to expand the scope of the organization to include a variety of platforms to support those impacted by Myositis, which included a new website along with a public Facebook page, “Understanding Myositis,” which promotes awareness, education and advocacy. The organization is now well represented on all major social networks including: Tumblr, Twitter, Pinterest, Google Plus, Instagram, YouTube and Flickr.
Feeling comforted that Myositis patients now had a great support mechanism, Jerry felt it was time to expand support beyond patients to include others affected by a Myositis diagnosis. In February 2014, a group for family members and friends of those living with Myositis was created. Myositis Family and Friends is also a closed Facebook support group, not for patients, but for those who are caring for a patient or a friend or family member of a patient seeking more information about Myositis as well as to give and receive support for the way the disease affects them.
The next endeavor, led by Sandy Morgan Block in June 2014, was to further assist the Inclusion Body Myositis community. IBM patients tend to have different questions and needs than those with other forms of inflammatory myopathies. Taking Sandy’s suggestion, Myositis Support and Understanding created the first closed Facebook support group for IBM patients, thereby creating a platform where they can privately discuss the effects of their disease and tools for coping.
In early 2015, led by Emily A. Filmore, we started a group for those “suspected” of having Myositis but have yet to be diagnosed. This group is helped through our traditional administrators as well as a group of mentors who are long-term members of our home group who support patients going through the often-frustrating diagnostic process.
MSU officially became incorporated May 13, 2015 as Myositis Support and Understanding Association, Inc. Obtaining non profit status became our next immediate goal. On June 30, 2015, MSU obtained its 501(c)(3) non profit status allowing us to start the hard work.
Jerry Williams, Sandy Morgan Block, and Emily A. Filmore are the founding directors.
If you are interested in helping, please be sure to visit our fundraising section, as well as our Shop. If you wish to make a tax-deductible donation, please do so on our Make a donation page.
As for our closed Facebook support groups, the membership continues to grow and the groups have kept the “family” dynamic where members, with only the link of a common rare disease diagnosis, build lasting relationships by providing support, encouragement, experience and educational resources.
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