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Myositis is a rare, autoimmune muscle disease without a cure

Learn more about Myositis and how MSU is helping patients and caregivers

Happy Holidays!
How to get others involved

Since you will likely gather with family and friends this holiday season, this is the perfect opportunity to ask them to get involved and to educate them about Myositis and MSU. Here are some ways you, your family members, and your friends can help:

1. Make a donation to MSU of any amount. Even $5 goes a long way. Join our FB Fundraiser here: https://www.facebook.com/donate/10154698595627210/ or make the donation on our website.

2. Ask family and friends to volunteer or even join our volunteer board of directors. Applications are on our website. (See Get Involved section of our site)

3. Provide educational tools by providing them our website address and asking them to register for a free membership. You can also order information cards and brochures to hand out.

We hope you, as a patient or care partner, will get involved in helping promote education and awareness of myositis while helping MSU gather the funds needed to continue helping you in 2017!

Rather donate on our website? Go for it!
Getting others involved with MSU
Types of Myositis

What is Myositis?

Myositis is a term meaning inflammation in the muscles. Our focus is the Idiopathic Inflammatory Myopathies of which there are several types, and all are classified as rare diseases. Idiopathic means the cause is unknown.

Polymyositis causes muscle weakness around the middle of the body and affects both sides of the body. Dermatomyositis causes muscle weakness as well as skin rashes. Juvenile dermatomyositis differs from the adult form because of the coexistence of vasculitis (inflammation of blood vessels). Inclusion body myositis mainly affects older individuals. As muscle weakness becomes severe, it is accompanied by muscle wasting and diminished deep-tendon reflexes. Unlike polymyositis and dermatomyositis, the muscle weakness is often not symmetric, and may be prominent in the smaller muscles of the forearms and calves.

Learn more about Myositis
Support options that make sense for Myositis patients

Looking for Support for Myositis?

If you have been diagnosed with a form of Myositis, or are a caregiver, family member or friend of someone who has, we have support options for you! We offer several methods of support that make sense for those with a muscle disease.

Get the support you deserve

Invisible Illness

Myositis, for so many, can be classified as an invisible illness where our outward appearance may cause others to think we are healthy. Learn more about this and how to respond.

Frustrations of having an invisible illness

ARE YOU READY TO GET INVOLVED IN HELPING THOSE WITH MYOSITIS?

Volunteer

As an all volunteer-managed organization, we are always looking for those interested in helping us with program development, planning, fundraising, and helping us continue in the right direction.

Become a Volunteer

Advoc8 and Educ8

We are making a difference, and with your help we can even more! Learn effective ways to help Advocate and Educate for Myositis and MSU. It is our Knowledge in Action philosophy.

Advoc8 and Educ8

Launch a Myositis Fundraiser

Fundraising is a necessary part of operating a nonprofit. In-person fundraising events yield better results, puts awareness in action, and provides us the money to help patients.

Launch a Fundraiser

End of the Year Giving Fundraiser

"GIVING TO GIVE BACK"

As a relatively new nonprofit organization that got its unofficial start in 2010 with Facebook support groups, MSU, now a nonprofit organization founded by Myositis patients, for Myositis patients, has accomplished a lot that benefits myositis patients and care partners. We need your help to go into the New Year with enough funds to continue the work we have started.

MSU is committed to improving the lives of Myositis patients and care partners

Founded by Myositis patients, for Myositis patients

YOU ARE NOT ALONE IN THIS JOURNEY

Myositis and related Information

Our site is large and contains a lot of information about, and related to, Myositis. Below are some important resources we suggest you check out to educate yourself, become involved and to locate resources. We care about our members and site visitors and hope to offer you the most complete, easy-to-read information we can.

Video Chat Sessions

Video Chats are fun, informative, and free! You can meet others living with Myositis. Be a part of the conversation. Register for all sessions that interest you.

Register for Video Chats

Our Programs and Services

Check out the programs and services we offer our Members such as financial assistance, letter writing review, advocacy, and online support programs.

View Programs and Services

Educate yourself

Learn about the different types and subtypes of Myositis, as well as how to diagnose and treat them. Learn about complications and overlap syndromes. This is for “Simply Put” series.

Learn about Myositis

Ways to help

Aside from donating and volunteering, there are many other ways you can help support MSU’s mission and further our goals helping us to continually move forward.

Find ways you can help

Clinical Trials

In association with CenterWatch.com, find clinical trials for Myositis by location, disease type, and keywords.  See current clinical trials available for Polymyositis, Dermatomyositis, and Inclusion Body Myositis

Find Clinical Trials

Find a Physical Therapist

Locate a physical therapist in or around your area. When finding a PT, you may want to ask if they have experience working with muscle diseases and disorders. This link will take you to another website.

Find a Physical Therapist

OFFERING MYOSITIS AND RELATED RESOURCES FOR YOU

Myositis Facebook Groups

We have Myositis support groups for patients, caregivers, family members, and friends. All Facebook groups are closed for your privacy.

Find Facebook Support Groups

Myositis Resources

Myositis resources to help you find support, help, and assistance. We have compiled a ton of helpful information just for you.

Myositis Resources

Caregiver Resources

Caregivers, you deserve all of the support you can find. We have compiled a listing of resources to help you.

Caregiver resources

TAKE ACTION NOW

Subscribe to our newsletter updates

Join MSU today by subscribing to our email newsletter! We do not spam, nor do we share any of your information. Don’t miss out on important organization updates, information, education, special offers, clinical trials, and so much more. Keep informed and take action!

Sign up to Volunteer

We are a completely volunteer-managed organization so that each and every donation makes the maximum impact. Our volunteers work from their homes to support MSU. Sign up to volunteer and be a part of a growing, patient-centered organization that is passionate and caring.

© Myositis Support and Understanding Association, Inc. 2010-2016. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

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