Help researchers and clinicians better understand how patients with myositis and other autoimmune conditions feel about COVID-19/the novel coronavirus.
Articles related to Myositis, Myositis Support and Understanding, and other relevant topics to inflammatory myopathies and autoimmune disease research, updates, knowledge, and education.
MSU is an organization which is operated by volunteers who understand Myositis on a very personal level. As patients with Myositis, we, too, experience the frustration of living with this disease which is rare and treatments which are harsh.
We understand that our medical team is extremely important to us, but that they have no way to truly understand what it is really like to live with our rare and complicated disease. So we lean on each other and learn from each other through our support groups, our website, and our nonprofit organization.
We continue to harness enthusiasm and determination focusing on educating each other, our friends and families, and the medical profession. Utilizing the energy we create working with each other to be a valuable force to the understanding and advocacy of these diseases and to provide assistance and support to people with Myositis.
The future of Myositis is bright, as is our future as an organization. We will post updates as we work towards our goals. We appreciate your support!
Watch the webinar as we welcome Babette Reeves, MA, MSW, LCSW, Behavioral Medicine Specialist, and she shares tools for...
Partner Spotlight: How Myositis Support and Understanding Association adapts and stays nimble
Charlene Fernandez of RDMD put MSU in the spotlight for Myositis Awareness Month, May 2020. Read the article to learn about MSU and two of the board members who also manage daily operations, and who are also living with myositis themselves.
Read the full article at https://www.rdmd.com/blog/partner-spotlight-myositis-supportand-understanding-association
Learn more about the RDMD and MSU partnership.
Trusted resources and updates about the coronavirus (COVID-19) pandemic and myositis, including newly updated information and resources to help...
Make your own fabric masks with this helpful information and some how-to videos for sew and no-sew fabric masks...
Financial Assistance Available for the Myositis Patient Community Impacted by COVID-19
, , News, Press
Myositis Support and Understanding Association Commits to Providing at least $60K in Financial Assistance for Myositis Patients Impacted by...
Learn more about using Zoom for MSU video support, activity and education sessions. Keeping software updated is important, as...
Clinical Trial of Arimoclomol in Inclusion Body Myositis during the COVID-19 Pandemic
, , Featured, Inclusion Body Myositis (IBM), News
Information from Orphazyme A/S about the Clinical Development of Arimoclomol in sIBM during the COVID-19 Pandemic. Read a statement...
MSU’s evolving plans for supporting the myositis community during the COVID-19 pandemic
, , Featured, Healthcare Tips, News
In light of the Coronavirus (COVID-19) worldwide pandemic Myositis Support and Understanding (MSU) will be shifting our focus to...
Many types of myositis (inflammatory myopathy) disproportionately affect women and women of color and there is much work to...
Medical experts we consulted are urging caution and vigilance but not hysteria regarding the Coronavirus. Check out resources in...
Helpful hints (not resolutions!) to start off the new year with a plan to work toward great mental health...
The Food and Drug Administration (FDA) regulates stem cell products in the U.S. and recently issued a warning about...
A Phase 2 Study of Zilucoplan in Patients with Immune-Mediated Necrotizing Myopathy
, , Featured, Necrotizing Autoimmune Myopathy, News
We are excited to announce our partnership with Ra Pharma for RA101495-02.202: A Phase 2 Study of Zilucoplan in...
Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)
, , Featured, News, Video
Watch the video, "Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)" with Helene Alexanderson, Ph.D. with...
In this video, Patrick Schmidt of FFF Enterprises and Michelle Vogel of CSI Pharmacy join MSU to explain the...
Myositis Support and Understanding (MSU) partners with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient...
Michelle Vogel of CSI Pharmacy, a sponsor of MSU and MyositisLIFE.org, provides information about the national Ig shortage. These...
Announcing the Mary Jane DeLauder Memorial Fund for inclusion body myositis
, , Featured, Inclusion Body Myositis (IBM), News, Press
Mary Jane's passion for welcoming and educating was well-known throughout the myositis community. That’s why we can think of...
Get Support!
