Support Starts Here
2024 Myositis Awareness Campaign
May is Myositis Awareness Month, and we hope you will join our campaign, Support Starts Here. Myositis Awareness Month will be a time dedicated to raising awareness about this rare and often misunderstood autoimmune disease. Myositis affects not only those diagnosed but also their loved ones, who play a crucial role in their journey toward healing and acceptance.
This year, we’re reaching out to our community to rally support and care for individuals living with myositis and their families. Your participation can make a significant difference in their lives, offering love, understanding, and meaningful assistance.
Click the GIVE button below to learn even more about getting involved.
Are you ready to have an impact on future DM treatments?
Take the Survey – The first-ever joint MSU-TMA survey of the Adult Dermatomyositis (DM) community that will be a part of presenting your voice, the patients’ voice and informing the FDA about the lived experiences of Adult DM patients and caregivers.
There are other ways you can participate as well. See the Learn More button below. But don’t wait – Take the survey today.
MSU is Seeking Passionate Volunteers!
We are seeking volunteers with special skills and experiences and from diverse backgrounds. Whether you are interested in moderating support groups, as a bookkeeper, working on administrative tasks, or project planning, or you have an interest and background in patient-centered research.
Many at-home volunteer opportunities are available RIGHT NOW as we continue to grow.
Volunteering helps us, but it also helps improve mental health. When you volunteer with MSU you are a part of a family. Submit your application today!
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assistance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. The program is available to U.S. residents. See full details available in our help guide.
At MSU, we are patients and caregivers, too. We started with support, and with our support programs, you will find a family. Join us for myositis patient and caregiver groups, Zoom support, and rooms on Clubhouse. You are NOT alone in this journey.
We believe in the patient-centered research approach – putting the patient at the center of any collaboration with industry, academia, and government agencies to improve the quality of life of ALL affected by myositis. Learn more about the research we are involved in, the impact it can have, and how you can get involved.
Watch recordings of our expert-led myositis educational videos to learn more about the various types of myositis and other myositis-related topics and patient opportunities. New videos just added!
We have put together a list of trusted resources for COVID-19. Be sure to stay tuned to your local and state public health office for details in your area.
MSU's Pain Paper
The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in the prestigious journal, Rheumatology and MSU is proud to make the paper available to everyone at no cost. Share with your doctors. Myositis Pain is Real!
Upcoming Myositis Support & Events
Men with Myositis Clubhouse Support Room
May 6 @ 7:00 pm - 9:00 pm ESTWomen with Myositis Zoom Support
May 6 @ 7:00 pm - 9:00 pm ESTMindfulness Discussions with MSU
May 8 @ 1:00 pm - 2:00 pm EDTMyositis Support Gets Moving on Clubhouse
May 9 @ 1:00 pm - 2:30 pm ESTWeekly Sunday Clubhouse Support
May 12 @ 7:00 pm - 9:00 pm ESTMyositis Support Gets Moving on Clubhouse
May 16 @ 1:00 pm - 2:30 pm ESTSaturday Afternoon Myositis Patient Support
May 18 @ 6:00 pm - 8:00 pm ESTWeekly Sunday Clubhouse Support
May 19 @ 7:00 pm - 9:00 pm ESTMyositis Reads – A book club for those with myositis
May 20 @ 3:00 pm - 4:30 pm EST
We are an all-volunteer 501(c)3 nonprofit organization. As such, we rely heavily on our community for donations and fundraising. Can you please Give from the Heart as a donation of any amount; yes, even $10 helps tremendously. Make it a monthly donation to give all year long!
Giving Feels Good – It’s only with your financial support that we continue to exist and help so many Myositis patients and care partners with our Myositis Patient Financial Assistance Program to help with bills, some housing circumstances, and to help cover costs of expensive mobility devices to stay mobile and safe as long as possible. Your donations help to restore dignity for those who need help but are often neglected.
Are you living with myositis?
There are many empowering opportunities for myositis patients. Get involved, advocate and educate, and be a part of traditional and unique patient-focused medical research, and more!