Welcome to Myositis Support and Understanding (MSU)!
MSU began as a Facebook group in 2010. Realizing that needs of patients and care partners were not being addressed, in 2015 MSU was created. We are an all-volunteer, patient-led 501(c)3 nonprofit organization, known as the Heart of the Myositis Community.
Our mission is to improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, patient financial assistance and access to research. We are working to improve the day-to-day lives of all who are impacted by Myositis.
Welcome to our new members from Myositis Global Network!
We welcome you with open arms and encourage you to create your free MSU membership while you are here.
The MSU membership registration is in addition to and separate from joining our Facebook groups.
View the MSU Brochures
These are excellent to also share with your doctor.
Let's get you in an MSU Support Group
Support for ALL Myositis Patients and Care Partners
Below are the MSU Facebook groups, and our Inspire Community. Please only request to join the group(s) in which you qualify.
When requesting to join our groups, you must answer the pre-qualifying questions that will pop up. If not answered, we will not allow you in the group. This is for the safety of everyone in the group.
Myositis Support on Facebook
This is our ‘home’ group. Open to ALL diagnosed Myositis patients, and a direct care partner or caregiver.
IBM Support on Facebook
A Facebook group just for people living with inclusion body myositis (IBM). In this group, care partners or caregivers are welcome.
Myositis Care Partners, Family & Friends on Facebook
We invite all caregivers, care partners, family members, and friends to join us for support and education. This is NOT for patients.
Necrotizing Myopathy Support on Facebook
A group just for those living with immune-mediated necrotizing myopathy (IMNM) / necrotizing autoimmune myopathy (NAM).
Anti-MDA5 Dermatomyositis Support on Facebook
A Facebook support group just for people living with MDA-5 positive dermatomyositis, and may serve as a potential research cohort.
Myositis Support Community on Inspire
Join our community on Inspire for 24/7 online support. Myositis patients and care partners. A great way to get support.
Learn about the idiopathic inflammatory myopathies (IIM) called Myositis
We have put together “Simply Put” information about the different types of Myositis, the idiopathic inflammatory myopathies (IIM).
Click the title to visit our full webpage for that type and click the button to download/save a PDF.
Dermatomyositis (DM)
Click the title above to visit our DM page. Click the button to view/save/download our DM information sheet.
Inclusion Body Myositis (IBM)
Click the title above to visit our IBM page. Click the button to view/save/download our IBM information sheet.
Polymyositis (PM)
Click the title above to visit our PM page. Click the button to view/save/download our PM information sheet.
Antisynthetase Syndrome (ASyS)
Click the title above to visit our ASyS page. Click the button to view/save/download our ASyS information sheet.
Immune-Mediated Necrotizing Myopathy (IMNM)
Click the title above to visit our IMNM/NAM page. Click the button to view/save/download our IMNM/NAM information sheet.
Join us on Clubhouse and Zoom for Support, Discussion and Activity sessions
from the Heart support
In addition to our online support groups, we have numerous Zoom and Clubhouse sessions. Some are weekly, some are monthly. All support sessions can be found on our events calendar. Zoom sessions require a one-time registration.
Join us for positive, from the Heart support. You are always welcomed with love and understanding.
Join for the support. Stay for the family!
Helpful Myositis Resources
Below are several important and helpful MSU resources including our Pain Paper
MSU Pain Paper
Read/Download/Share: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies,” published in Rheumatology. The pain with Myositis is real.
Summary FDA Listening Session on DM
MSU hosted the FDA Listening Session on Adult Dermatomyositis. While these are closed sessions, we have provided a detailed summary that you can read.
Explaining Myositis to others
This article, we have been told, is really useful to help patients explain various aspects of myositis to family members and friends. Open or print it out to share.
Watch Myositis Videos
Watch videos about myositis and topics related to life with myositis. A wide variety includes scientific webinars, patient-led sessions, helpful clinical trial information, the Exercise in Place series, and much more.
Myositis Care Partners
Our Myositis Care Partners help us live our best lives and we honor their love and support. In return, we want to help you take care of yourself. Check out some of these resources and join us for from the Heart support on Facebook and Inspire.
Myositis Resources
We provide a host of resources for people living with Myositis. Also includes ways to find doctors and physical therapists who are experienced with Myositis, and information about extra muscular symptoms of Myositis.
MSU Patient-Centered Research
Learn more about our stragegy and philosophy and see some of our accomplishments
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.
Important MSU Programs
Patient Financial Assistance Program
Our signature program, the Myositis Patient Financial Assistance program has awarded over $300K since its start in 2017. This program provides needs-based assistance with emergency household expenses, medical bills, and costly mobility devices. We know living with Myositis is hard enough. We are here to help.
Exercise in Place Webinar Series
Created together with Megan and Laren from the Johns Hopkins Myositis Center, this five-part series provides helpful information and demonstrations to help you exercise at home. There is an entire episode for care partners, to keep them safe as well. This is a “don’t miss” series since exercise/movement is essential for those of us living with Myositis.
Myositis Support Gets Moving
Exercise/Movement is treatment for Myositis, backed by science. In this group, we create our own individualized plan including getting optimal protein intake and the opportunity to work with support partners. It is not an exercise class. Myositis Support Gets Moving meets every Thursday on Clubhouse at 1 PM ET/10 AM PT.
MSU is an All-Volunteer Nonprofit Organization
Meet our Board
Meet our volunteer Board of Directors, all patients and care partners dedicated to improving the quality of life for those impacted by Myositis. Meet the members and learn more about their journey and why they chose MSU. And, meet the MSU Research Team.
Meet our Volunteers
We are an all-volunteer organization, led by Myositis patients, care partners, and supporters. Without the hard work and dedication of our volunteers, MSU would not exist. If you are interested in volunteering, see more here.
Register for your Free MSU Membership
Your membership will add you to our email list so you don’t miss any important Myositis news, educational events and webinars, or our “from the heart” support activity and discussion groups. Registration also allows us to have a listing of those who might be interested in being a part of patient-centered projects, like focus groups.
