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!
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.
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.
Register to attend “New insights on sIBM pathogenesis” by Dr. C. Weihl, on May 23rd at 12 PM EDT.
Register to attend “New Developments on the Role of Itch in Dermatomyositis” by Dr. Victoria Werth on May 30th at 2 PM EDT.
Subscribe to our YouTube Channel
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.
Myositis in Focus
Handmade Bracelets
“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.
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.
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.
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.
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!
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.
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.
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.
MSU and Myositis: Take Action
Donate
Make a tax-deductible donation to help us move forward with our mission, vision, and goals. Empowering the Myositis Community.
Get Support
We offer several online support options for patients, caregivers, family members and friends. Get the myositis support you deserve.
Explore Myositis
Learn more about the different types of Inflammatory Myopathies (myositis). Education is empowering. Read, watch videos, and put Myositis In Focus.
