The Power of Our Voice
Are you looking to get more involved? We are seeking a Board Treasurer!
We are an all-volunteer organization made up of Myositis patients and caregivers, and supporters, who are passionate about helping others. We are a virtual organization so more of our donor’s money goes directly to helping those who are impacted by Myositis. We do this by providing “from the heart” support on various platforms, providing “Simply Put” education people can understand, increasing outreach and community-building, patient-centered research initiatives, partnerships with other organizations, industry, and academia, and our signature program, the Myositis patient financial assistance program. You are not alone in your Myositis journey.
Register for your FREE MSU Membership to stay updated, get support reminders, and get involved!
Search our site filled with myositis news and updates, education, events, research, and more.
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.
IndeeLift Delivers!
Steve Powell, founder/CEO of IndeeLift was contacted by patients with inclusion body myositis to adapt the residential machine to their needs. After trialing with several patients, IndeeLift is now delivering. The machine now lifts to 30″, to a standing position. And IndeeLift is offering the HFL-400-FTS exclusively to members of MSU at a discount with each purchase generating funds for myositis research! Special thanks to Jerry King for the video. Follow IB Myositis on YouTube!
Myositis News and Updates
Dermatomyositis and Sun Protection, Dr. Graham makes it clear the sun can cause flares. She talks about sunscreens and physical blockers, how to use them correctly, along with UV-protected clothing, and more.
Dr. Graham educates about the skin manifestations of myositis, sharing the various DM rashes, cosmetic cover-ups, information and tips for dry skin and itching, scalp itch, and info about digital ulcers, cuticles, Raynaud’s, and more. This is an excellent overview.
Co-authors of “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies”, published in Rheumatology discuss the background of the study – the call to action – and what it takes to publish and where we go from here on pain with myositis. Drs. Bhai and Bhashyam also take questions about pain.
Upcoming Myositis Events
Myositis Support Gets Moving on Clubhouse
June 30 @ 1:00 pm - 2:30 pm EDT#MyositisLIFE: Weekly Sunday Clubhouse Support
July 3 @ 7:00 pm - 9:00 pm EDT#MyositisLIFE: Men with Myositis Clubhouse Support Room
July 5 @ 7:00 pm - 9:00 pm EDT#MyositisLIFE: Women with Myositis Zoom Support
July 5 @ 7:00 pm - 9:00 pm EDT#MyositisLIFE: Wednesday Evening Myositis Patient Video Support
July 6 @ 7:00 pm - 9:00 pm EDT
Myositis Support & Understanding and AllStripes are partnering to create a database that will enable new Dermatomyositis research projects!
We’re looking for patients/families willing to contribute their de-identified medical records to make this effort as strong as possible. See more details and enroll if you are interested in being a part of this medical research, from home.
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!
Myositis patients, here are some opportunities:
Like and Follow Myositis Support and Understanding (MSU)
on our social networks to engage with the myositis community.
