May is Myositis Awareness Month

Myositis in Focus

Explore the various ways you can help promote awareness through education, personal stories, live online events, fundraising, and more.

Start today and help make a huge impact by putting “Myositis In Focus.”

Announcing the new, customized App for myositis!

Free app in partnership with Portable Genomics

We announced earlier this year our intentions to create an app for the myositis community. Phase one of our goal has been realized!

It is with great excitement to announce the release of the”NuMe” App for myositis, a pilot study App in partnership with Portable Genomics. Currently available for iPhone users, the App is free and enables myositis patients and caregivers to better collect, manage and share important health data with treatment teams, researchers and the pharmaceutical industry.

The data you track and collect, for your own use, is secured on your smartphone and personal cloud. If you consent to sharing data for research purposes your personal information is scrubbed to protect your privacy; you have the ability to opt in or out of sharing at any time.

Read more about and download the App, and see more about our exciting partnership with Portable Genomics.

MSU and Portable Genomics, teaming up to bring a tailored health data management platform to myositis patients

Promoting Awareness through Education

We have scheduled several of the myositis experts to lead live, online video sessions throughout May 2018. These sessions are open to the public, are free, and require registration.

Explore all events and register for those that interest you.

New Developments on the Role of Itch in Dermatomyositis by Dr. Victoria Werth

Register to attend “New Developments on the Role of Itch in Dermatomyositis” by Dr. Victoria Werth on May 30th at 2 PM EDT.

You don’t want to miss this!

Register for this session
Subscribe to MSU on YouTube

Subscribe to our YouTube channel to be notified when we “go live” and to watch educational and informative videos related to the inflammatory myopathies. All of our live online education sessions are recorded and are added to our YouTube channel. So, subscribe today!

Myositis Support and Understanding

Empowering the Myositis Community

MSU is instrumental in helping to improve the lives of patients fighting this rare, complicated immune-mediated muscle, skin, and often multi-organ disease by being the very first patient-centered organization to offer live, online, video patient support and education sessions that simply make sense for those living with a muscle disease that involves limited mobility and with patients spread across the world.

MSU also provides a “Simply Put” education series, offers clinical trial matching, advocacy, several online support options, awareness building programs, and need-based financial assistance for patients.

More about MSU

Myositis in Focus

Handmade Bracelets

Myositis in Focus Bracelet

“Myositis In Focus” handmade aluminum bracelets by Jammin Hammer Jewelry. A generous 25% of sales of this bracelet will come to MSU. See full bracelet details on the order page! International shipping is now available.

Purchase your bracelet

Register for free membership

Join us as an official member and you will receive email updates when new awareness materials are available and have your very own MSU Myositis Network account and profile, and much more. We are working to improve our onsite community, along with many other tech updates and offerings.

Register for your Membership Login
Myositis in Focus, Awareness Theme 2018

Myositis Awareness Month, this year led by a patient committee, will focus on the realities of Myositis, both as a patients and caregivers. We hope to bring both the difficult journey to diagnosis and difficulty in living with such a rare, often invisible and complex disease, into focus. See full details on our Awareness page.

Myositis Awareness Month

Get started today!

To watch the 2018, A Day of Remembrance video event, visit our YouTube page.

Would you like to submit the name and photos of someone you lost to myositis for the 2019 day of remembrance? Use the button below.

Share your loved one's info for 2019

MSU is a 501 (c)(3) nonprofit operated by all volunteers. As a nonprofit, we are not able to do the work we do without the generous support of our donors and sponsors, and the extensive amount of time our volunteers put in.

You can help by creating a Myositis Awareness fundraiser.

See ways to fundraise

Check out the live, online video education sessions scheduled for Myositis Awareness Month, May 2018. Sessions are free and require registration.

Register today to attend the sessions that interest you!

Explore and Register for Events

Purchase “Myositis In Focus” Awareness gear through our affiliate shop on Cafepress.

Order wristbands, brochures, information cards and pens to hand out to your friends, family members, physicians, and other healthcare providers to promote awareness.

Shop MSU MaterialsShop Myositis In Focus

Awareness Theme, Myositis In Focus

Myositis looks, presents, and responds differently for each patient, even with the same type.

Share what your myositis life looks like in photos, short videos, or as a story.

We will share these materials publicly during May 2018 to help others better understand our complex and rare disease.

Share your Myositis Life

Show your support through social networking. Use the MSU awareness graphics for Facebook and Twitter and add the MSU “Myositis In Focus” Facebook frame to your profile photo.

On Facebook, click your profile photo and choose Add Frame. Search “myositis in focus” to find the MSU frame and add it.

Get social graphics
Myositis In Focus Awareness page

MSU and Myositis: Take Action

What is Myositis?

Our focus, Idiopathic Inflammatory Myopathies, or myositis, includes Dermatomyositis, Inclusion Body Myositis, Polymyositis, and Necrotizing Autoimmune Myopathy. Start learning more about myositis.

Educate Yourself

Myositis Programs and Services

Check out the Myositis patient-centered programs and services we currently offer including education, financial assistance, and support. We are developing new programs to help myositis patients and caregivers.

See Programs we offer

Support that makes sense

We bring support directly to you! It can be tough to get out with this often-debilitating disease. Join our FB groups, video support sessions, and onsite Myositis Network.

See support options

Myositis Life

We learn from the experiences of other myositis patients and caregivers. Read and watch member-submitted #MyositisLife content, and look closer at the realities of myositis.

Explore #MyositisLife

Clinical Trial Matching

Easier way to view and locate myositis clinical trials. We have partnered with Antidote! Easy-to-read clinical trial information and contacts. Patients are needed for important studies.

Clinical Trial Matching

Get Involved

We are in this together! So, why not get involved? We have many opportunities available for volunteers, support group administrators, and board members.

Get Involved Today!

Effortless Ways to Help

We have joined with many different resources to help you help us help you! See some of the ways you can help by simply doing the things you normally do!

Find ways you can help

Myositis Events

We offer free myositis and related events. Whether they are myositis-specific video support sessions or educational sessions and webinars, they are always free and easy to join.

Upcoming Myositis Events

Shop the MSU Store

Show your support and help promote myositis awareness with our branded gear. Products such as wristbands, educational materials, apparel, pens, tumblrs, and more.

Shop MSU Gear

Shop more MSU gear

We have expanded our shopping options. From shirts and tote bags, to mugs, drinkware, and other fun stuff, shop the MSU Cafepress store today. Awareness gear 2018 now available!

Shop MSU on Cafepress

Donate

Make a tax-deductible donation to help us move forward with our mission, vision, and goals. Empowering the Myositis Community.

Make a Donation

Get Support

We offer several online support options for patients, caregivers, family members and friends. Get the myositis support you deserve.

See Support Options

Explore Myositis

Learn more about the different types of Inflammatory Myopathies (myositis). Education is empowering. Read, watch videos, and put Myositis In Focus.

Explore Myositis

Myositis Support and Understanding // Patient-Centered Nonprofit

Empowering the Myositis Community

© Myositis Support and Understanding Association, Inc. 2010-2018. All Rights Reserved. MSU is a patient-centered 501(c)(3) nonprofit organization.

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