Hand with hearts

Donate to improve the lives of myositis patients!

We can’t do it without YOU!

Myositis Support and Understanding (MSU), an all-volunteer, patient-led 501(c)(3) nonprofit founded by patients, works to improve the lives of and empower those impacted by Myositis, a group of rare, systemic, autoimmune muscle diseases for which there is no cure.

We are a non-profit founded by Myositis patients, for Myositis patients and care partners. Our all-volunteer team understands the burden this disease has on the lives of patients, care partners, and families. Your contribution has an immediate impact; combating isolation and improving mental health through vital education and support programs; leading novel research by giving voice to the burden of the patient journey; the FINANCIAL ASSISTANCE PROGRAM – lifting the financial burden of the disease through assistance for household and medical expenses.

Consider a recurring monthly contribution to spread your giving throughout the year! Click Monthly to set it up.

Click to Give

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!

Patient Financial Assistance

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.

Get Support

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.

Patient-Centered Research

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.

Myositis Video Library

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!

COVID-19 and Myositis Resources

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

Accessible Travel – See the World on your Terms

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.

Risk vs. Benefit – Making the Decision to Join a Clinical Trial

Risk vs. Benefit - Making the Decision to Join a Clinical Trial From a patient perspective Kambiz (Kam) Roghanchi, a volunteer with Myositis Support and Understanding (MSU) and a patient living with refractory dermatomyositis, takes us through his journey that led to his decision to participate in a clinical trial. He takes us through the pros and cons, and the [...]

Watch the MINT Clinical Trial for Myositis Patients with Interstitial Lung Disease Webinar

Watch the MINT Clinical Trial for Myositis Patients with Interstitial Lung Disease webinar with Dr. Rohit Aggarwal. This clinical trial is unique because you won’t need to visit a study center. You can participate in the study from the comfort of your own home. No need to worry about traveling long distances or spending time away from your surroundings. The goal of this study is to gain a better understanding of how anti-fibrotic drugs can help treat myositis associated with ILD. The study will focus on the drug Nintedanib (brand name Ofev®), an oral anti-fibrotic medication approved by the Food and Drug Administration (FDA) for the treatment of various types of ILD.

Upcoming Myositis Support & Events

Hand with hearts

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?

Patient Opportunities

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!

MSU Sponsors

Like and Follow Myositis Support and Understanding (MSU)
on our social networks to engage with us and the myositis community.

© 2024 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.

View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

Log in with your credentials

or    

Forgot your details?

Register for Free Membership