On Tuesday, September 8 the locally started organization Myositis Support and Understanding Association (MSU) announced that it has received approval from the IRS and are now a registered 501(c)(3) nonprofit organization. Founded by Milford resident Jerry Williams, MSU will continue to build its influence as they commit to bringing awareness and funding to help fight the rare disease. Myositis, also known as Idiopathic Inflammatory Myopathy, is a group of rare diseases that can arise spontaneously and that the cause of is unknown. A very challenging disease to detect, this group of diseases is believed to be autoimmune in nature causing symptoms such as muscle weakness, trouble with swallowing and weight loss.
“Becoming a nonprofit organization has been a dream of mine since 2010 and now that it is real, we can begin to serve our mission to help support and educate Myositis patients, caregivers, and healthcare providers, and soon provide financial assistance to patients in need,” said Jerry Williams, Founder and President of MSU.
Diagnosed by Myositis in 2005, Williams was originally told two years earlier by doctors that the pain he experienced was phycological until a muscle biopsy was performed. In an effort to remove the same challenges associated with lack of awareness that he faced with diagnosis and treatment, Williams felt a need to help individuals and families that are facing this disease. With little knowledge on the group of diseases, Williams wanted to advocate for awareness of the condition not only to physicians but for individuals experiencing similar symptoms to his and their family members. Leading this effort, he began several social media groups including Myositis Support & Understanding that acts as a resource for information and also an online community where individuals can share their own experiences with others.
In addition to the recent non-profit status, MSU now operates several online Facebook support groups for patients, caregivers, and those suspected of having Myositis. The support groups currently serve over 2,000 members from around the United States and worldwide. The focus of the groups is to provide education, resources, and to offer emotional support; helping patients and caregivers to understand they are not alone in the struggle of living with or caring for someone with Myositis. Gaining more attention in Delaware last week, Williams joined Governor Markell as the Governor declared in September a statement in observance of Myositis Awareness Month in the State of Delaware and called upon all citizens to learn more about Myositis and advocate for increased funding for research and educational programs.
As a nonprofit, MSU’s goals include support, education, awareness, self-advocacy, providing financial assistance to Myositis patients, as well as teaming up with existing nonprofits to help fund Myositis research and advancements in treatment options; hopefully, one day, leading to a cure. MSU has ongoing fundraisers and an online store where Myositis products can be purchased. Tax-deductible donations are always welcomed and appreciated. A volunteer Board of Directors governs MSU and 100% of contributions are used for the organization’s mission.
“We are an organization started by Myositis patients dedicated to helping all Myositis patients and their families,” said Emily Filmore, MSU Vice President. For more information about MSU, Myositis, and to become involved, individuals are encouraged to visit http://www.UnderstandingMyositis.org.