#Giving4Myositis
Join us for our #Giving4Myositis Campaign!
First, we thank you for making #GivingTuesday a huge success! We have the best supporters and members.
#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.
Featured Myositis News and Updates
The research found that DM patients with the anti-transcriptional intermediary factor 1 (anti-TIF1) antibody were more than three times more likely to develop cancer than DM patients without the anti-TIF1 antibody.
The authors propose that a new classification system for Idiopathic Inflammatory Myopathies (IIM) based on phenotypic (observable characteristics), biologic and immunologic criteria is needed based on the results of their study. One of the difficulties associated with the diagnosis and treatment of IIMs is that they affect patients differently.
MSU is just getting started. You see, as long as there are still people dying from the various myositis diseases, we will be here to ensure patients and caregivers have a place to share experiences and knowledge and to get the education they deserve to effectively self-advocate and have informed conversations with their healthcare providers. We will be here to provide patients in need with financial assistance that will help them travel to see myositis specialists, help cover emergency household expenses, and mounting medical bills.
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.
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.
