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
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Lincoln, DE (PRWEB) September 08, 2015
Myositis Support and Understanding Association (MSU) announced today that they have received approval from the IRS and are now a registered 501(c)(3) nonprofit organization.
“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,” says Jerry Williams, Founder and President of MSU.
Now is the time that we need the help of the public and the Myositis community to make a concerted effort to educate and inform every medical professional that we encounter, every family member that we love, and every patient diagnosed about Myositis. Myositis is a rare, autoimmune neuromuscular disease, including: dermatomyositis, polymyositis, inclusion body myositis, orbital myositis, and juvenile dermatomyositis/myositis. Myositis is a rare disease, according to NORD, affecting less than 200,000 people in the United States. There is no cure for Myositis. Symptoms may include muscle weakness, fatigue, skin rashes, lung disease, chronic pain, swallowing difficulty, and a host of other debilitating issues such as overlap disease. Overlap is when another autoimmune disease is present and may include Lupus, Scleroderma, Raynaud’s Phenomenon, and Sjögren’s Syndrome.
MSU 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.
At the end of each day, if even one member can say, “I am relieved to know that I am not alone and that my experiences are real, “ MSU will count itself a success.
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,” says Emily Filmore, Vice President.
For more information about MSU, Myositis, and how you can become involved, please visit our website at: http://www.UnderstandingMyositis.org