MSU was built on the idea that myositis patients and caregivers could form a community of family who would be there for each other while learning ways to cope with our rare disease. We have an opportunity today to stand with each other more than ever.
The vision statement for MSU says that we aim to “create a world where patients, caregivers, and providers have better knowledge, support, and understanding of myositis.” However, until systemic oppression is addressed in policing, education, medicine, and in countless other places, we will never be able to achieve this vision. We unequivocally state our support for racial equality and justice for those wrongfully killed, the Black Lives Matter movement, and the constitutional right to protest peacefully around the United States. Additionally, we recognize that autoimmune disease and myositis, specifically, disproportionately affect Black women and the healthcare system often leaves Black people and other People of Color (POC) behind in access to care, testing, treatments, and compassion.
To this end, MSU sets the following goals, to:
- Amplify the voices of our Black members, other members who are POC, and their stories of health care inequality.
- Cultivate relationships with Black-led and other POC-led health organizations and find ways to support their missions.
- Continue to support people with myositis through online and video support groups and our financial assistance program.
- Support research into the ways medical disparity affects Black people and POC with myositis.
Suggestions our MSU community can do to support our Black and other POC members:
- Actively Read/listen about the history and legacy of racism in the United States.
- *Take an inventory to assess any implicit biases you may still hold. https://www.glaxdiversitycouncil.com/resources/harvard-implicit-association-test-iat/
- Read/listen to the history of medical disparity in the United States.
- Donate plasma used to make immunoglobulin (IG therapy) if you can!
- Donate plasma for medical research and for use in making diagnostic test kits.
- Volunteer for MSU or join our board.