2022 CDC guidelines look to rectify the mistakes made in the 2016 Guidelines that led MSU to a survey...
Archive for category: News
Articles related to Myositis, Myositis Support and Understanding, and other relevant topics to inflammatory myopathies and autoimmune disease research, updates, knowledge, and education.
MSU is an organization which is operated by volunteers who understand Myositis on a very personal level. As patients with Myositis, we, too, experience the frustration of living with this disease which is rare and treatments which are harsh.
We understand that our medical team is extremely important to us, but that they have no way to truly understand what it is really like to live with our rare and complicated disease. So we lean on each other and learn from each other through our support groups, our website, and our nonprofit organization.
We continue to harness enthusiasm and determination focusing on educating each other, our friends and families, and the medical profession. Utilizing the energy we create working with each other to be a valuable force to the understanding and advocacy of these diseases and to provide assistance and support to people with Myositis.
The future of Myositis is bright, as is our future as an organization. We will post updates as we work towards our goals. We appreciate your support!
Independence Chair by VELA – How it can help you stay independent in your home

Watch the recording of Myositis Support and Understanding presents the Independence Chair by VELA – How it can help...
Statement on Medication Access for the Myositis Community

The Myositis Association (TMA) and Myositis Support and Understanding (MSU) have been made aware of circumstances where patients across...
MSU is attending the 2022 Global Conference on Myositis in Prague and will be represented in two (2) scientific...
The Power of Our Voice: FDA Listening Session for Adult DM Webinar

Watch the recording of our fireside chat, The Power of Our Voice: FDA Listening Session for Adult Dermatomyositis, where...
View the summary of our first-ever FDA Listening Session on Adult Dermatomyositis. This was an opportunity to facilitate the...
Izandra Rudolph-Heard, our new Community Outreach Advisor for Research who is currently pursuing her Masters of Education in Mental...
Kezar Announces Topline Results from the PRESIDIO Trial of Zetomipzomib for the Treatment of Dermatomyositis and Polymyositis
Immune Globulin Therapy: All your questions answered

The team from CSI Pharmacy and two patient experts joined to answer your questions about Ig therapy, IVIG and...
Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies

We are excited to announce our first publication, “Pain profile and opioid medication use in patients with idiopathic inflammatory...
MSU is excited to welcome Abhiram R. Bhashyam, MD, Ph.D., Hand and Upper Extremity Orthopaedic Surgeon at Massachusetts General...
Myositis Support and Understanding announces reaching a milestone of giving $250k in myositis patient financial assistance.
MSU to host the first FDA Listening Session for Adult Dermatomyositis!

MSU is hosting the first FDA Listening Session on Adult Dermatomyositis on April 26, 2022. We hope the FDA will come...
A heartwarming thanks to all 405 members who participated in our survey. This survey was created to help us...
See how the IndeeLift can change your life. Don’t let the cost deter you. If insurance will not cover,...
Cheilonda Johnson, MD, MHS, joined the MSU family for a discussion about taking charge of your interstitial lung disease...
To better fulfill its mission of improving the lives of and empowering those fighting myositis Myositis Support and Understanding...
Doctor Salman Bhai MD joins the board of Myositis Support and Understanding as Medical Advisor

We are excited to announce that doctor Salman Bhai MD will be joining the MSU board as Medical Advisor....
MSU Myositis Awareness Month Apparel, three campaigns to choose from, or purchase from all. #MyoForest, #MyoRainbow, and #MyoHeartsandMinds
Orphazyme announces topline results of Phase 2/3 trial of arimoclomol for Inclusion Body Myositis (IBM)

Learn more about the announcement from Orphazyme, communicating the topline results from the Phase 2/3 trial of arimoclomol for...