When a family member, friend, or even if you are diagnosed with a rare disease like myositis, wouldn’t you like to have access to information and support programs to help you understand it?

Myositis Support and Understanding (MSU) is a patient-led, all-volunteer 501(c)(3) nonprofit organization on a mission to improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, and access to research.

Your donation makes a real and immediate impact in the lives of myositis patients (rare disease patients), including the expansion of our financial assistance program, funding patient-led research efforts, and building on the work we do with education, awareness, and patient and caregiver support.  

The inflammatory myopathies, which are generally referred to as myositis, is a group of rare, incurable systemic autoimmune diseases, which includes sporadic inclusion body myositis, dermatomyositis, immune-mediated necrotizing myopathy, juvenile dermatomyositis, antisynthetase syndrome, and polymyositis. There are no FDA approved treatments for any form of myositis, and there are no treatment options at all for those living with inclusion body myositis. While myositis is classified as a muscle disease, it can also affect the heart, lungs, skin, and GI tract, and can be associated with cancer. 

Learning to adapt to ongoing and changing abilities, mental health needs, and pain is a part of the process for many living of us living with this rare, chronic illness." says Jerry Williams, Founder and President of MSU. 

As a patient-led volunteer nonprofit organization founded by myositis patients for myositis patients and caregivers, MSU's volunteers truly understand and are passionately giving their collective skills and experiences to make a difference.  

Read and share about living with myositis on our newest website, #MyositisLIFE

Make A Donation

Myositis Support and Understanding



When a family member, friend, or even if you are diagnosed with a rare disease like myositis, wouldn’t you like to have access to information and support programs to help you understand it?

Myositis Support and Understanding (MSU) is a patient-led, all-volunteer 501(c)(3) nonprofit organization on a mission to improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, and access to research.

Your donation makes a real and immediate impact in the lives of myositis patients (rare disease patients), including the expansion of our financial assistance program, funding patient-led research efforts, and building on the work we do with education, awareness, and patient and caregiver support.  

The inflammatory myopathies, which are generally referred to as myositis, is a group of rare, incurable systemic autoimmune diseases, which includes sporadic inclusion body myositis, dermatomyositis, immune-mediated necrotizing myopathy, juvenile dermatomyositis, antisynthetase syndrome, and polymyositis. There are no FDA approved treatments for any form of myositis, and there are no treatment options at all for those living with inclusion body myositis. While myositis is classified as a muscle disease, it can also affect the heart, lungs, skin, and GI tract, and can be associated with cancer. 

Learning to adapt to ongoing and changing abilities, mental health needs, and pain is a part of the process for many living of us living with this rare, chronic illness." says Jerry Williams, Founder and President of MSU. 

As a patient-led volunteer nonprofit organization founded by myositis patients for myositis patients and caregivers, MSU's volunteers truly understand and are passionately giving their collective skills and experiences to make a difference.  

Read and share about living with myositis on our newest website, #MyositisLIFE