
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.
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.
AllStripes IBM Program
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!
AllStripes DM Program
Register to participate in research for DM
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!
Get, and Give Support
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.
Find your Clinical Trial Match
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.
Donate plasma for medical research
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.
Yale IBM Patient Registry
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).
Donate Plasma
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.
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.
Exercise in Place Series
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!
IBM and Dysphagia
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.
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.
Downloads to save and share
Download the MSU Organization Brochure.
Download and visit our patient opportunities on the Take Action Flyer.
Download the 2020 Myositis Awareness Toolkit which includes myositis information sheets, share graphics, and information about advocacy.
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!