MSU’s evolving plans for supporting the myositis community during the COVID-19 pandemic

In light of the Coronavirus (COVID-19) worldwide pandemic Myositis Support and Understanding (MSU) will be shifting our focus to fully supporting our members through this challenging time in various ways.

We started by providing an easy to access section on our website to provide the myositis community with trusted resources about the COVID-19 pandemic. Read our latest article here.

We held an initial video support session about the coronavirus on Sunday, March 15, 2020. Even with little notice, 70 people living with myositis joined us. This session gave us a perspective that helps us better provide for the needs of the myositis community.

The need for people to feel embraced and supported is here, and MSU is ready to serve.

Our plans are evolving but we will always be here for you.

We will start with:

  • Pausing our Myositis Awareness Month campaign planning and instead focusing energies on education and awareness about safety and preparation for the coronavirus and self-isolation, and possible mandatory quarantines;
  • Helping myositis patients through our financial assistance program, specifically by placing a higher priority on emergency household expenses. Our 2020 budget of $60,000 for the assistance program will enable us to help many myositis patients affected during the pandemic;
  • Expanding our support program to include additional video support sessions for members (myositis patients, caregivers, family members, and friends) to talk about their feelings and share their experience-based tips and strategies on coping with isolation;
  • Working to introduce options for 1-on-1 peer support;
  • Continuing to disseminate updates to our members through our websites and social media platforms from the CDC, WHO, The American College of Rheumatology and The Arthritis Foundation, as well as known myositis specialists and others who provide credible and verifiable information; and
  • Continuing to provide support and education through our websites and social media, while discouraging political discussion, conspiracy theories, inaccurate medical information from being shared within our support communities.

“Our organization exists because of utilizing online technology to connect myositis patients and caregivers. As social distancing becomes the ‘norm’ for the immediate future, we will step up, even more, to support each other and minimize the resulting feelings of isolation. Together, we can protect ourselves and others by staying updated and following the recommended guidelines.” – Jerry Williams, Founder and President of Myositis Support and Understanding (MSU)

As patients and caregivers ourselves, we thank you for your support and understanding in these trying times. We hope to remain a trusted advocate and place of refuge for our members; a safe place to voice your feelings and a place to find reliable, educational, and emotional support. You are not alone. We are in this together. We are here for you.

Read our COVID-19 articles and updates

Coronavirus (COVID-19) and Myositis Update (updated 3/22/2020)

Coronavirus concerns with Myositis (updated 3/11/2020)

MSU COVID-19 and Myositis Resources (PDF)

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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© 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.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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