You are not alone!
MSU was founded by myositis patients for myositis patients and caregivers. You are never alone in your journey with this rare, life-changing disease.
Join us for 24/7 online support, various patient video support sessions, and take a look at the programs available to you. We understand because we are living it too. We look forward to meeting you!
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assitance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. Program is available to U.S. residents. See full details available in our help guide.
Plasma donations are down 40% since the lockdown, and without an increase in plasma donors there could be a shortage of IG (IVIG, SCIG) used to treat myositis and many other diseases. Learn more, find a plasma donation center, and invite your family and friends to donate and join the #ItsMyTurn campaign.
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 including an update to our plans at MSU to pause business as usual and focus mostly on supporting our fellow patients and caregivers in this difficult time.
Applications for assistance to attend TMA's Virtual Summit now open!
The Virtual Summit is on May 22nd and the cost is $35.00.
We understand that not everyone can afford to attend conferences and events, despite the cost being low. We want to help remove financial barriers so everyone can learn more about their illness and have the same opportunities to network and to learn how to advocate for themselves.
Check out the details and apply by April 12th.
All information is confidential and you will never be identified as getting assistance.
Limited Time 2021 Myositis Awareness Month Apparel
Check out the new MSU Myositis Awareness Month Apparel!
Limited time so order today!
We have three (3) campaigns available in various styles and colors of hoodies, raglans, and t-shirts!
Check out the full details and links to the campaigns to order. These make great gifts, and we hope you will share these with your friends and family members!
Myositis News and Updates
MSU Myositis Awareness Month Apparel, three campaigns to choose from, or purchase from all. #MyoForest, #MyoRainbow, and #MyoHeartsandMinds
Learn more about the announcement from Orphazyme, communicating the topline results from the Phase 2/3 trial of arimoclomol for Inclusion Body Myositis (IBM).
Diversity, Equity, & Inclusion are not buzz words, a trend, or a P.R. campaign for our organization. MSU has chosen to authentically approach DEI through the implementation of meaningful solutions developed by the “Our Lives Matter” DEI Initiative.
Upcoming Myositis Video Events
Monthly Saturday Afternoon Myositis Patient Video Support
April 17 @ 3:00 pm - 4:30 pm EDT|Recurring Event (See all)An event every month that begins at 3:00 pm on day Third of the month, repeating until December 18, 2021
One event on September 20, 2020 at 3:00 pm
Monthly Necrotizing Myopathy Patient Video Support session
April 24 @ 3:00 pm - 4:30 pm EDT|Recurring Event (See all)An event every month that begins at 3:00 pm on day Last of the month, repeating until December 25, 2021
One event on December 26, 2021 at 3:00 pm
One event on February 28, 2021 at 3:00 pm
DM, PM and Antisynthetase Syndrome Patient Video Support
April 28 @ 7:00 pm - 8:30 pm EDTIBM Patient Video Support session
April 30 @ 5:00 pm - 6:30 pm EDT|Recurring Event (See all)An event every month that begins at 5:00 pm on day Last of the month, repeating until January 28, 2022
One event on December 18, 2020 at 5:00 pm
Have you ever grieved your losses due to chronic illness? Have you grieved over how your life has changed as a caregiver?
Award-winning artist, Aoede, Lisa Sniderman, has been living with dermatomyositis for over 12 years. She recognized that she forgot to grieve her own illness and realized that through music, she could reach many others who may have also forgotten to grieve.
“The Grieving Project is a road map to our hearts, an invitation for you to grieve your loss, your change, your unexpected and unwanted transformation, and the inspiration and encouragement you need to awaken, express, rejuvenate, activate, connect, shine and truly thrive!”
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!
Myositis patients, here are some opportunities:
Like and Follow Myositis Support and Understanding (MSU)
on our social networks to engage with the myositis community.
