Support Starts Here
2024 Myositis Awareness Campaign
As we approach May, Myositis Awareness Month, 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. If not you or me, then who will step up to continue helping to fund our organization with a donation as little as $5-$10. Let’s make Awareness Month this year a CELEBRATION of achievements in Myositis and HONOR those suffering or who have lost their lives to this awful disease. We pull together, as a community, to make decisions. Invest in our future by getting involved.
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, volunteering on administrative tasks, project planning, or have an interest in patient-centered research, we have many opportunities available RIGHT NOW as we continue to grow.
Volunteering helps improve mental health and when you volunteer with MSU, you are a part of a family and you will have fun! 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!
Myositis News and Updates
MSU and TMA are leading the first-ever Adult Dermatomyositis Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on June 7, 2024. In this webinar you will learn all about what we are doing and what YOU CAN DO to participate in the meeting on June 7. This is all about sharing your voices so that the FDA can learn what’s important to patients and caregivers and how the disease affects our lives.
Watch recorded webinar – SitnStand joins MSU for a webinar about a life-changing product for those with disabilities like Myositis. The products are designed to assist you in sitting and standing, allowing you to enjoy your own furniture or wheelchair. Learn more about this product by watching the recording of the live webinar.
Watch the recording of this great webinar that includes excellent Q&A! Alvaro Silberstein, co-founder of “Wheel the World” joins MSU for a webinar about Accessible Travel, sponsored by the VALOR Study.
Upcoming Myositis Support & Events
Myositis Support Gets Moving on Clubhouse
April 25 @ 1:00 pm - 2:30 pm ESTIBM Patient Video Support
April 26 @ 5:00 pm - 7:00 pm ESTNecrotizing Myopathy Patient Video Support
April 27 @ 7:00 pm - 9:00 pm ESTWeekly Sunday Clubhouse Support
April 28 @ 7:00 pm - 9:00 pm ESTWednesday Evening Myositis Patient Video Support
May 1 @ 6:00 pm - 8:00 pm ESTMyositis Support Gets Moving on Clubhouse
May 2 @ 1:00 pm - 2:30 pm ESTWeekly Sunday Clubhouse Support
May 5 @ 7:00 pm - 9:00 pm ESTMen 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 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!
