Watch "Polymyositis: The evolution of this diagnosis in light of recent research" with Dr. Christopher-Stine, who also discusses immune-mediated...
Archive for category: Myositis
The primary focus of Myositis Support and Understanding is muscle diseases which are referred to as “Idiopathic Inflammatory Myopathies” or “Acquired Myopathies,” meaning muscle diseases which are typically not inherited and are caused by the immune system attacking muscles, connective tissue, blood vessels, and/or the skin.
The NT5C1A Antibody Test and its Role in the Diagnosis of Inclusion Body Myositis

Learn more about the NT5CIA antibody and its association with inclusion body myositis from Dr. Kevin Dooley, a retired...
PR: MSU, Portable Genomics teaming up to bring a tailored health data management platform to myositis patients

Portable Genomics and Myositis Support and Understanding Association (MSU) have partnered to enable myositis patients to better collect, manage,...
Corbus Pharmaceuticals will host Jerry Williams, the Founder and President of MSU, Heather Spadaccini, Jerry’s friend and part-time caregiver,...
Explaining myositis (Idiopathic Inflammatory Myopathy) and how it affects our lives is difficult. There isn’t a simple, clear-cut answer...
Living with, and trying to overcome, autoimmune diseases affect all the people we love. Those of us who have...
Dr. Victoria Werth, MD, presents, "Overview and new developments in Dermatomyositis." This was a live Myositis Support and Understanding...
Orphazyme formally assumes the sponsorship of Phase II/III arimoclomol trial for sIBM

On December 14, 2017, Orphazyme A/S, University of Kansas Medical Center, and UCL announced that Orphazyme formally assumes the...
Learn more about the different types of Myositis Live Online Video Support, Education, and Activity Sessions we offer, how...
FDA grants Orphazyme drug arimoclomol orphan drug designation in the U.S.

Orphazyme A/S, a Danish biotech company with a late-stage orphan drug pipeline, today announced that the U.S. Food and...
Chronic Illness, Myositis, and Depression: The following are the comments I gave to a support group about my book,...
Learn more about Rose's experience on Capitol Hill during Rare Disease Week 2017. Find helpful links to Advocacy organizations...
Although everyday life seems like a mad dash to the finish line honestly it’s all about staying the course...
Sadly, my mum lost her battle as an IBM warrior

Mums journey was a very difficult one. I remember her first fall the day I gave birth to...
A short story about Jerry Williams, president of MSU, and getting involved

It has been over 13 years since Jerry Williams, president of MSU, was diagnosed with Polymyositis, sometimes simply referred...
As we continue our rapid growth, we are looking for volunteers and Board Members who are interested in donating...
Learn more about Lynn Lizarraga and her online video laughter yoga program she provides to members of Myositis Support...
There are many challenges faced by patients living with a rare, chronic illness like Myositis. These can include: medication...
Simply stated, an “orphan disease,” sometimes called a “rare disease,” describes one of more of 7,000 diseases affecting relatively...