MSU is a forest . . .
Rare Disease Day 2021 – As you may know by the common idiom “you can’t see the forest for the trees,” it is often easy to lose your perspective when you are so focused on the “trees” or the details of a situation. Being diagnosed with myositis can be overwhelming. There is so much information that we tend to lose sight of the most important part – the “forest,” or in this case, the help and support MSU extends. MSU can help you see the forest as well as the trees.
Like a forest is made up of many trees, MSU is made up of many resources and guidance, creating the strong community it is.
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assitance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. Program is available to U.S. residents. See full details available in our help guide.
Plasma donations are down 40% since the lockdown, and without an increase in plasma donors there could be a shortage of IG (IVIG, SCIG) used to treat myositis and many other diseases. Learn more, find a plasma donation center, and invite your family and friends to donate and join the #ItsMyTurn campaign.
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 including an update to our plans at MSU to pause business as usual and focus mostly on supporting our fellow patients and caregivers in this difficult time.
Myositis News and Updates
Diversity, Equity, & Inclusion are not buzz words, a trend, or a P.R. campaign for our organization. MSU has chosen to authentically approach DEI through the implementation of meaningful solutions developed by the “Our Lives Matter” DEI Initiative.
Clinical trials are a key research tool for advancing medical knowledge and patient care. Join Kezar Life Sciences as Dr. Noreen Henig provides an overview of the clinical trial process, their importance in research and bringing new therapies to the market. Dr. Henig shares information around the PRESIDIO Study for PM, DM, and IMNM.
For patients, caregivers, family and friends, watch Part 5 of our popular Exercise In Place series with the OT/PT team at Johns Hopkins Myositis Center.
Upcoming Myositis Video Events
Monthly Saturday Afternoon Myositis Patient Video Support
March 20 @ 3:00 pm - 4:30 pm EDT|Recurring Event (See all)An event every month that begins at 3:00 pm on day Third of the month, repeating until December 18, 2021
One event on September 20, 2020 at 3:00 pm
IBM Patient Video Support session
March 26 @ 5:00 pm - 6:30 pm EDT|Recurring Event (See all)An event every month that begins at 5:00 pm on day Last of the month, repeating until January 28, 2022
One event on December 18, 2020 at 5:00 pm
Monthly Necrotizing Myopathy Patient Video Support session
March 27 @ 3:00 pm - 4:30 pm EDT|Recurring Event (See all)An event every month that begins at 3:00 pm on day Last of the month, repeating until December 25, 2021
One event on December 26, 2021 at 3:00 pm
One event on February 28, 2021 at 3:00 pm
Monthly Wednesday Evening Myositis Patient Video Support
April 7 @ 7:00 pm - 8:30 pm EDT|Recurring Event (See all)An event every month that begins at 7:00 pm on day First of the month, repeating until December 1, 2021
Have you ever grieved your losses due to chronic illness? Have you grieved over how your life has changed as a caregiver?
Award-winning artist, Aoede, Lisa Sniderman, has been living with dermatomyositis for over 12 years. She recognized that she forgot to grieve her own illness and realized that through music, she could reach many others who may have also forgotten to grieve.
“The Grieving Project is a road map to our hearts, an invitation for you to grieve your loss, your change, your unexpected and unwanted transformation, and the inspiration and encouragement you need to awaken, express, rejuvenate, activate, connect, shine and truly thrive!”
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!
