LINCOLN, DE, UNITED STATES, November 21, 2017 — Myositis Support and Understanding (MSU) is once again a participant in #GivingTuesday, a global day of giving. Since its inception in 2012, #GivingTuesday has become a movement that celebrates and supports giving and philanthropy and brings people together around the values of service and giving back. Occurring this year on November 28th, #GivingTuesday is held annually on the Tuesday after Thanksgiving in the U.S. Following the widely recognized shopping events of Black Friday and Cyber Monday, #GivingTuesday kicks off the holiday giving season, inspiring people to improve their local communities and give back in impactful ways to the charities and causes they support.
Myositis Support and Understanding (MSU), a patient-centered, all-volunteer nonprofit organization began as an outreach to patients with Idiopathic Inflammatory Myopathies, or Myositis. Myositis, including dermatomyositis, polymyositis, necrotizing autoimmune myopathy, orbital myositis, sporadic inclusion body myositis, and the juvenile forms, is a group of rare, debilitating, and often-misdiagnosed diseases with limited to no approved treatment options available. As part of our ongoing advocacy we help match patients with ongoing clinical trials to increase the advancement of treatment for myositis.
Those suffering with one of the forms of Myositis had few options when seeking support and education about this disease. MSU’s mission was to fill that void by providing Myositis patients and their families awareness, support, advocacy, and education. To this end, an interactive website was created, along with support groups where patients and their families and caregivers could interact online and connect with other patients and with healthcare professionals.
Erin Holt, a member of Myositis Support and Understanding and its Online Support Group, in explaining when she was seeking a diagnosis, says, “I was shunted from specialist to specialist, and various theories were thrown out from lupus to cancer. I already felt so bad. I couldn’t believe I was getting even sicker. I began each day feeling as if I had run a marathon in my sleep. I couldn’t shake the awful sensation that I was dying. It would be a whole year until I was formally diagnosed with connective tissue disease-associated dermatomyositis and another four before I would partially recover from it.”
Erin’s struggle in obtaining a proper diagnosis is all too common with the rare, autoimmune forms of myositis with a timeframe of 3 plus years for many patients.
More recently, MSU has been able to offer need-based financial support for living and medical related expenses. In order to raise the funds needed to continue the support programs, to move forward with additional outreach plans, and to continue to provide grants to myositis patients in need, MSU is participating in #GivingTuesday.
“Living up to our mission we have continually engaged myositis patients, caregivers, and family members to be a part of their myositis nonprofit through the utilization of newer and interactive technologies. Through social media, online video support software, and the MSU website we have brought together these rare disease patients, scattered across the globe, enabling them to support, educate, and advocate for themselves and for each other. Giving is at the center of everything we do at MSU and we look forward to the celebration of giving through #GivingTuesday and our year-end campaign.” Jerry Williams, Founder and President of Myositis Support and Understanding.
We implore you to learn more about the rare disease Myositis by visiting our website, UnderstandingMyositis.org, or by contacting us directly.
Make a donation to help support Myositis Support and Understanding patient-centered programs and services. Any amount makes a difference. Donations online at UnderstandingMyositis.org/donate
It feels good to give and we are thankful for anything you can contribute to help us continue helping myositis patients across the United States and Worldwide.
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Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register