The time for waiting is over.
NOW is the time to get involved and to take action.
Now is the time for you, as someone living with myositis, to raise your voice, to be heard, and to take action. Whether you participate in a survey, join a registry, enroll in a clinical trial, donate plasma, educate others, or take part in any number of other things, you can take charge today and contribute to accelerating myositis research and expanding outreach and advocacy.
Now available: Take the Global Rheumatology Alliance COVID-19 Vax Survey
Understanding COVID-19 Vaccine Experiences and Perceptions
Our partner Inspire surveyed tens of thousands of people about their vaccine experiences, such as post-vaccination symptoms and side effects. We invite you to explore the results through Inspire’s interactive dashboard.
We also encourage you to share your own vaccine perceptions, symptoms, and access as a person affected by myositis by taking the ongoing survey.
If you are not yet a part of our Inspire community, join today for 24/7 support for myositis patients and caregivers by visiting Myositis.Inspire.com.
Empowering Myositis Patient Opportunities
Check out the various ways below in which you can be involved. These are opportunities for myositis patients to Take Action now. Additional partnership and opportunity listings are coming soon.
Register to participate in research for IBM
Make a difference by contributing to research with your existing medical records by joining the AllStripes, formerly RDMD, Inclusion Body Myositis program. You can make a difference!
Encourage your family and friends to donate plasma
Plasma donations are down 40% since the lockdowns due to COVID-19. Without an increase in plasma donors, we face a shortage of life-saving therapies like IVIG and SCIG. Ask family and friends to donate.
Join us on Inspire, and for video support
Support is essential and is how MSU started. Patients and Caregivers, get the support you deserve by joining us in the Myositis Support Community, a partnership with Inspire.
An easier way to find clinical trials
Clinical trials require patient participation. Use the Antidote Technology Match Tool to easier locate, and read, clinical trials in which you may be eligible to participate. Find your Match today by clicking the image above.
A paid opportunity for myositis patients
You could earn up to $200 per donation of plasma. This is not whole blood donation. This is plasma used for medical research such as discovering new autoantibodies and for making diagnostic test kits for myositis autoantibodies.
Join the registry and use free tools
Join the inclusion body myositis patient registry at Yale and start using your free IBM Personalized Index Calculator, which makes use of the IBM Functional Rating Scale (IBMFRS).
Will you give 5?
Myositis Support and Understanding is an all-volunteer 501(c)(3) nonprofit and relies on your support to fund patient and caregiver programs, patient-focused research, and need-based patient financial assistance.
Can you give 5, or more, monthly? Setting up a recurring donation is easy and you will be helping ensure that MSU has the funding needed. Donations are tax-deductible in the U.S. Another great option is using the Round Up App.
Educational Myositis Patient Opportunities
Take Action with education. Below are some informational and educational resources you can use to educate your friends and family members, and your healthcare providers.
Watch video series, find exercise resources
Watch our Exercise in Place webinar series with Megan, Lauren, Fin, and Ruben, the OTs and PTs at Johns Hopkins Myositis Center. Videos include exercise, fall response, and other demonstrations!
Educate your doctor about IBM dysphagia
Complications from dysphagia is one of the leading causes of death in inclusion body myositis; often choking or aspiration pneumonia. This summary provides an overview and link to extensive research you should share with your doctor.
Myositis Empower Walk
Learn more about the Myositis Empower Walk, created in loving memory of Bob Landman by his family. The 2nd Annual Myositis Empower Walk raised over $17,000! Start planning for the 3rd Annual Myositis Empower Walk in 2021, which will again include virtual participation.
Additional Ideas, Resources, and information
Take action by sharing your life with myositis, which can help family members, friends, and the public to better understand myositis, and for fellow patients to see they are not alone.
Take action by informing your doctor of MSU and ask if they will provide our information to new patients so patients and caregivers can immediately get the support they deserve.
Take action by volunteering your time, skills, and expertise in needed areas for MSU.
Take action by making a donation of any amount.
Take action by registering for free MSU membership to also receive our email updates.
Take action by filling out surveys when they are shared.
Connect with myositis patients and caregivers
We encourage myositis patients and caregivers to join us for free, 24/7, online community support and education. Join the MSU Family on the Myositis Support Community, a partnership with Inspire. Popular topics in our support communities include mobility adaptations, pain, skin rashes, emotional and mental health, relationship challenges, and research. Join us free today!