It's Myositis Awareness Month!
From the Heart
Our “From the Heart” fundraising campaign is now open! YOU can donate or create your own fundraiser with your own personalized page or get a group together and form a Team!
Our “From the Heart” campaign reflects the passion and dedication of the all-volunteer MSU team, and our supporters, who work tirelessly to improve the quality of life for people living with Myositis and provide vital resources, patient-centered research, support, education, and financial assistance to those in need. By giving from the heart, YOU can help MSU continue to make a difference in the lives of people affected by this rare group of diseases and their families. No matter the amount you can give, we thank you in advance and are grateful to have your support.
Be sure to also register for your free membership to receive our emails so you don’t miss anything!
Our Events Calendar includes support sessions, activity sessions, and webinars.
Search our site filled with myositis news and updates, education, events, research, and more.
We are seeking volunteers with special skills and experiences. Whether you are interested in moderating our support groups, volunteering on administrative tasks, project planning, or have an interest in patient-centered research, we have many opportunities available as we continue to grow.
Volunteer Today!
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assistance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. The program is available to U.S. residents. See full details available in our help guide.
At MSU, we are patients and caregivers, too. We started with support, and with our support programs, you will find a family. Join us for myositis patient and caregiver groups, Zoom support, and rooms on Clubhouse. You are NOT alone in this journey.
We believe in the patient-centered research approach – putting the patient at the center of any collaboration with industry, academia, and government agencies to improve the quality of life of ALL affected by myositis. Learn more about the research we are involved in, the impact it can have, and how you can get involved.
Watch recordings of our expert-led myositis educational videos to learn more about the various types of myositis and other myositis-related topics and patient opportunities. New videos just added!
We have put together a list of trusted resources for COVID-19. Be sure to stay tuned to your local and state public health office for details in your area.
MSU's Pain Paper
The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in the prestigious journal, Rheumatology and MSU is proud to make the paper available to everyone at no cost. Share with your doctors. Myositis Pain is Real!
Myositis News and Updates
A webinar with Dr. Salman Bhai, Neurologist at UTSW and MSU’s medical advisor, discussing the aches and pains we deal with living with Myositis and ways we can help manage the pain. And, he answers your questions.
Priovant Therapeutics joins MSU to discuss The Valor Study for Dermatomyositis, a phase 3 clinical trial for Adult Dermatomyositis. Learn more about this trial and consider if this is a clinical trial you might consider.
Watch the recording and get additional resources. Michael Martin, Vice-President Marketing of IndeeLift joins MSU to discuss a solution for those who are prone to falling like people with myositis, and especially those with inclusion body myositis.
Upcoming Myositis Events
Myositis Support Gets Moving on Clubhouse
June 8 @ 1:00 pm - 2:30 pm EDT#MyositisLIFE: Weekly Sunday Clubhouse Support
June 11 @ 7:00 pm - 9:00 pm EDTMindfulness Discussions with MSU
June 14 @ 1:00 pm - 2:00 pm EDTMyositis Support Gets Moving on Clubhouse
June 15 @ 1:00 pm - 2:30 pm EDT#MyositisLIFE: Saturday Afternoon Myositis Patient Video Support
June 17 @ 3:00 pm - 5:00 pm EDT#MyositisLIFE: Weekly Sunday Clubhouse Support
June 18 @ 7:00 pm - 9:00 pm EDTMyositis Reads – A book club for those with myositis
June 19 @ 3:00 pm - 4:30 pm ESTLGBTQIA+ Myositis Support on Clubhouse
June 20 @ 7:00 pm - 9:00 pm EDT
Are you living with myositis?
There are many empowering opportunities for myositis patients. Get involved, advocate and educate, and be a part of traditional and unique patient-focused medical research, and more!
