Time for waiting is over. Take Action!
Join us for a continued push for increased advocacy and action! The Time for Waiting for Over. We urge you to get involved and take action now.
Join us for upcoming webinars, video support, opportunities with our partners and sponsors, and so much more. What will you do today?
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 solely on supporting our fellow patients and caregivers in this frightening time.
Upcoming Myositis Video Events
The Tiger at the Door: The Relationship between Trauma and Chronic Pain
October 24 @ 7:00 pm - 8:00 pm EDTIBM Patient Video Support session
October 30 @ 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 December 25, 2020
One event on December 18, 2020 at 5:00 pm
Necrotizing Myopathy Patient Video Support session
October 31 @ 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 26, 2020
Monthly Wednesday Evening Myositis Patient Video Support
November 4 @ 7:00 pm - 8:30 pm EST|Recurring Event (See all)An event every month that begins at 7:00 pm on day First of the month, repeating until December 2, 2020
Flip Negativity
November 12 @ 5:00 pm - 6:00 pm ESTMonthly Saturday Afternoon Myositis Patient Video Support
November 21 @ 3:00 pm - 4:30 pm EST|Recurring Event (See all)An event every month that begins at 3:00 pm on day Third of the month, repeating until December 19, 2020
One event on September 20, 2020 at 3:00 pm
Back by popular demand!
While the 2nd Annual Myositis Empower Walk may be over, the desire to get the shirts is alive and well! So we are providing a special campaign if you want to get a shirt. They make great gifts as the material is UV protected and moisture-wicking fabric. They are good quality shirts, with an awesome purpose.
Just click on a photo below to visit the order page. Ordering is available through October 30, 2020.
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!
Myositis patients, here are some opportunities:
Myositis News and Updates
Young adults living with rare diseases have many unmet needs and many life decisions that can be impacted by their illness. In this webinar, Seth Rotberg and Morgan Gleason share their experiences as young adults advocating with and empowering young adults.
Manuel Lubinus, MBA, Ph.D. has been appointed to our newly created Scientific Advisory Board as Patient-Centric Research Advisor and joins William Tillier, BSc, MSc, International Scientific Advisor. Manuel was diagnosed with Inclusion Body Myositis in the spring of 2019
Meet two people with myositis who are living their lives with purpose and positivity. Holly Jones and Rhonda Rogers will talk about their journey from diagnosis to advocacy and how the lessons they are learning can help each of us.
Share your experience and skills as a volunteer
We are an all-volunteer nonprofit organization so volunteers make it all happen. If you have the time and a true passion for helping others, we hope you will consider volunteering with MSU. There are many virtual opportunities right now for anyone interested. Join our Family!
