Myositis Support Starts Here!
MSU is instrumental in helping to improve the lives of patients and care partners affected by the group of rare, complicated immune-mediated muscle diseases, Myositis, which may also affect the skin, heart, lungs, digestive tract, and muscles, and for some, pain.
We offer a host of live support sessions, video and audio-only, along with online support groups. We provide educational information via our “Simply Put” format and a critical emergency financial assistance program for Myositis patients. We have accomplished so much and with you on our team, we will do even more. We welcome a donation and/or volunteering your time. You can also share with your friends and family the information we provide for awareness, research, and more.
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!
We are seeking volunteer Bookkeepers!
Do you believe in our mission, have time, and want to give by using your skills and experience in finance? We are looking for a self-starter who works well individually and in a team environment. All volunteer positions are virtual, you can work from home or office. We are looking for 2-3 experienced people.
Some of the duties of the MSU Bookkeeper include:
- Maintaining the general ledger
- Reconciling bank and other cash accounts
- Preparing monthly financial statements and analyses
See the full position description here and click below to apply online. We want to continue being an all-volunteer nonprofit and we can’t do it without YOU!
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
July 18 @ 1:00 pm - 2:30 pm ESTSaturday Afternoon Myositis Patient Support
July 20 @ 11:00 am - 1:00 pm ESTWeekly Sunday Clubhouse Support
July 21 @ 7:00 pm - 9:00 pm ESTMyositis Support Gets Moving on Clubhouse
July 25 @ 1:00 pm - 2:30 pm ESTIBM Patient Video Support
July 26 @ 5:00 pm - 7:00 pm ESTNecrotizing Myopathy Patient Video Support
July 27 @ 7:00 pm - 9:00 pm ESTWeekly Sunday Clubhouse Support
July 28 @ 7:00 pm - 9:00 pm ESTMyositis Support Gets Moving on Clubhouse
August 1 @ 1:00 pm - 2:30 pm ESTWeekly Sunday Clubhouse Support
August 4 @ 7:00 pm - 9:00 pm EST
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!
