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Myositis Patients, Take Action!

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.

Take Action and be involved in IBM research

RDMD IBM Program

Register to participate in research for IBM

Make a difference by contributing to research with your existing medical records by registering to join the RDMD Inclusion Body Myositis program. You can make a difference!

Take Action by donating plasma

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.

Take Action with support

Get, and Give Support

Join us on Inspire, and for video support

Support is essential, and where we started. Patients and Caregivers, get the support you deserve by joining us in the Myositis Support Community, a partnership with Inspire.

Get your clinical trial Match with Antidote's Match Tool

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.

PSG+MSU+You: Your Role in the World of Diagnostics

Donate plasma for medical research

This is 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-registry-800

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).

Join the Myositis Empower Walk

Check out the details and start planning today for virtual participation from home, or attend in person in Henderson, NV. Either way, you can actively participate. Start by planning using the Empower Walk details we have provided so far. Be creative! The Myositis Empower Walk is Saturday, September 19th.

Myositis Empower Walk, The Landman Family

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 our Exercise in Place video series

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!

Summary of Dysphagia in patients with sporadic inclusion body myositis: Management challenges

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.

Myositis Support Community in partnership with Inspire mockup graphic

Connect with other 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!

© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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