Get the Support you deserve
Patients, Caregivers, and Family Members
We offer the best support to myositis patients, caregivers, and family members. Whether it’s our on-site community, our Facebook support groups, or our live online video support sessions, we are always here for you because we are patients and caregivers too.
#GivingTuesday 2018
#GivingTuesday is a Global Day of giving and a way to give back.
Join us starting on #GivingTuesday, November 27th, for our annual #Giving4Myositis campaign and kick off to our year-end fundraising season! There are many ways you can give, financially and through the gift of time.
#Giving4Myositis is the myositis community’s hashtag to help promote awareness of myositis and how myositis patients, caregivers, researchers, physicians, nurses, family members, friends, and the public, can give back to MSU to help us continue giving back to the myositis community through education, support, advocacy, access to research, and financial assistance for patients in need.
November is National Family Caregivers Month!
Myositis Support and Understanding understands and appreciates the important role that caregivers and care partners play in helping to manage their loved one’s disease. They are the rock and foundation for any patient living with Myositis. Without them, their loved one may feel alone, isolated, and may not be able to do the things they enjoy.
Share your unique caregiving story and solutions with us to share publicly and find helpful tips and resources!
Featured Myositis News and Updates
Clinical trials and studies require patient groups in clearly defined categories, but the multiple diagnostic and classification criteria used for IIM are problematic. This review offers more clear criteria.
The purpose of this article is to describe advancements in the diagnosis of Inclusion Body Myositis (IBM) and therapy for patients of IBM as presented in scientific publications since 2016. IBM is considered one of the idiopathic inflammatory myopathies (IIM), but is unique because it is resistant to treatment and therapy does not produce lasting benefits.
One of our goals is to provide inclusion body myositis patients with access to research. MSU is excited to announce a new, mutually beneficial relationship with Orphazyme, the Danish biopharmaceutical company sponsoring the Arimoclomol Phase II/III clinical trial for sporadic inclusion body myositis.
In this study, the researchers set out to determine if there was a distinction between the type of autoantibodies present in dermatomyositis patients and the incidents of skin eruptions while taking hydroxychloroquine.
Smartphone App for Myositis
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 share 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.
NEW: Rash Monitoring module now available in the app!
Education and Support are key
We have hosted several myositis experts to lead live, online video sessions throughout 2018. All sessions were held online with live participation. These sessions were recorded and we hope you will take advantage of the educational opportunities these provide for you and your family members.
Find the videos on our YouTube page and share with your loved ones.
Myositis Support and Understanding
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.
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.
