May is Myositis Awareness Month!
Join us for a month-long Myositis Awareness Campaign with education, fun-raising, fundraising, educational, game, and support sessions, giveaways, the MSU Anti-Fundraiser, and much more!
Stay tuned via email, social networking, and here, on our website, for updates. Let’s all Take Action!
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.
Myositis News and Updates
Watch “Understanding Dysphagia” with Suzanne Belmonte, who is a myositis patient, and speech-language pathologist. Learn more about dysphagia from Suzanne’s expertise and her personal experience with severe dysphagia.
To better fulfill its mission of improving the lives of and empowering those fighting myositis Myositis Support and Understanding (MSU) announces additions to the organization and changes to its board and officers.
We are excited to announce that doctor Salman Bhai MD will be joining the MSU board as Medical Advisor. Dr. Bhai is an Assistant Professor in the Department of Neurology at UT Southwestern in Dallas, Texas and Director of the Neuromuscular Center at the Institute of Exercise and Environmental Medicine (IEEM) at Texas Health Presbyterian Hospital Dallas.
Upcoming Myositis Video Events
Living with Myositis, An Awareness Month Discussion hosted by This is RARE.
May 14 @ 7:00 pm - 9:00 pm EDTMonthly Saturday Afternoon Myositis Patient Video Support
May 15 @ 3:00 pm - 4:30 pm EDTMyositis and COVID
May 18 @ 7:00 pm - 8:00 pm EDTHands-on PT for Myositis Patients
May 20 @ 2:00 pm - 3:00 pm EDTMyositis Do-It-Yourself Accessibility Adaptations with Larry M.
May 21 @ 5:00 pm - 6:00 pm EDTDM, PM and Antisynthetase Syndrome Patient Video Support
May 26 @ 7:00 pm - 8:30 pm EDT
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.
