May is Myositis Awareness Month!

The Year of the Tiger: Hear the Myositis Community Roar!

May is Myositis Awareness Month and this year Myositis Support and Understanding (MSU) will focus on giving voice to the community.

2022 is the Chinese Year of the Tiger and just as the tiger embodies courage and bravery, MSU’s theme promotes resilience, strength, and determination in the actions we are taking and the impact we are having to improve the quality of life for our community. Join us for a month of awareness and education from the patient and caregiver perspective!

Celebrate our caregivers – We will highlight Myositis caregivers and care partners and discuss how we can show our gratitude for all they do for us. Caregivers make life possible for many patients with Myositis.

Support – Learn how we break down the walls of isolation and connect with our diverse community by joining our “from the Heart” support sessions on Clubhouse and Zoom.  And tend to your emotional health with a group session, “What Brings You JOY?” with Lisa Sniderman and Jessica Taylor, and a workshop, “Simple steps to focus on your emotional wellbeing” with Lori Wong. And, announcing our new Young Adults with Myositis Zoom group starting May 9th, which will be held monthly on the second Monday.

Education – Join us in attending the IgNS 6th Annual Patient 360 Virtual Conference, May 21-22: a free conference for patients and caregivers. We will also host a talk about Ig Therapy, the clinical and insurance details we need, and the patient perspective, sponsored by CSI Pharmacy. We will welcome Alexion to talk about a Clinical Study in Dermatomyositis, and Dr. Lauren Graham, co-director of the Rheum/Derm clinic at UAB will join our DM, PM, Antisynthesase Zoom support session to talk about skin and how we can protect ourselves from the sun.

Advocacy – The power of our voice can impact the direction of research and clinical trials.  Join us in a virtual Fireside Chat on the lessons learned from our FDA Listening Session for Adult Dermatomyositis.

Research – MSU is taking the lead in addressing critical quality of life issues such as pain.  Join us for a retrospective look at how a community call to action led to a seminal study on pain in Myositis and what it means for the community, with Drs Salman Bhai and Abhiram Bhashyam, co-authors of Pain profile and opioid medication use in myositis.

Community Giving – With your help, we raised enough in the last 5 years to award over $250K in myositis patient financial assistance! This needs-based program provides for emergency household expenses, medical bills, and costly mobility and assistive devices to help patients gain or maintain their independence. Let’s help even more patients in need. Join us in creating your own personalized MSU Awareness Month fundraiser either on Facebook or using our new Classy platform.

As you see, there are plenty of opportunities for you to ROAR! And we can all ROAR even louder by sharing, getting involved, and being a part of our community fundraising! The more you share, and the more you give, the more we can do for the Myositis Community.

Be sure you are a registered member so you receive important emails! Register for free at https://understandingmyositis.org/

Myositis Awareness Month 2022

Tiger graphics by member, McKenna Mae

Start ROARING by helping us reach our $10,000 Myositis Awareness Month goal!

Social Media Photo Frames

Check out some examples and create your own social media frame with the type of myositis you have to help promote awareness. Use as your Facebook profile, Clubhouse bio photo, and any other networks you are a part of.

To add your photo to the frame:
  • Click the link below to go to the specific Canva template.
  • Click the purple “Use Template” button. Create a free Canva account if you don’t have one, and log in if you do.
  • Upload a photo you want to use in the template
  • Once uploaded, drag the image into the circle that looks like a landscape right now.
  • Once you have it in place, download your photo frame.
  • Download options are under the Share menu.

Myositis Caregiver Template

Myositis Care Parnter Template

Dermatomyositis Template

Inclusion Body Myositis Template

Polymyositis Template

Autoimmune Necrotizing Myopathy Template

Antisynthetase Syndrome Template

Clinically Amyopathic Dermatomyositis Template

Mixed Connective Tissue Disease Template

Juvenile Dermatomyositis Template

#MyositisLIFE – Your voice needs to be heard

One way to increase awareness of what it is like to live with myositis is to share your experiences living with myositis and tell your story! We invite you to share your story at MyositisLIFE.org. You can talk about living with symptoms, your medications or side effects, or your diagnosis journey. You can tell an inspirational story about when you found happiness in spite of myositis, really, anything you want to share about your journey will help others understand what it is like to live with myositis and increase awareness.

Share your experiences in an article, in photos, or in a video. Or, incorporate them all!

Visit MyositisLIFE.org, register for your account, and then get started!

Myositis Life website, patient and caregiver experiences
I have a rare muscle disease, myositis

Share, Share, Share!

We are providing various images and content you can share

This year’s MSU social media campaign has three main parts to help our members and others understand the work MSU does on behalf of patients and what we can do as patients, care partners, and other community members to make our lives better. Increasing awareness improves the lives of patients in so many ways medically, emotionally, and in relationships! One of the best ways to reach the public is to share MSU’s posts!

Download the Share images to use (.zip)

“The Grieving Project” by award-winning artist, Lisa Sniderman, Aoede, is a new inventive, unique spoken word audiobook intended to speak to and empower those of us with chronic illness, loved ones and caretakers to grieve our losses from illness, and inspire us to thrive. Lisa, who is living with dermatomyositis, is donating 50% of the sales of this album to MSU. Learn more about the project. It is available now on Audible.

Upcoming Webinars & Events

Providing free easy-to-access and understand education about idiopathic inflammatory myopathies (myositis) and related topics, this year with a focus on bringing forth the patient and caregiver voices.

Myositis Awareness Month 2022
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.

Ways to promote Myositis Awareness

Promoting Awareness of Myositis can be as simple as talking to your family members and friends about your experiences, ways they can help support patient-centered myositis nonprofits like MSU, and ways they can learn more and get involved.

There are other ways you can help make an even larger impact. Utilizing some of the ideas below can help spread the word to a larger audience. We are happy to help you in any way we can.  Contact us and let us know what you need to make your awareness promotion and fundraising event a success.

Facebook cover images

To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Facebook profile and add it as your cover image.

Twitter cover images

To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Twitter profile and add it as your cover image.

  • Contact the health or community reporter your local TV station

    Contact your local TV station or community reporter to go on a local TV show and tell your myositis story. Make it personal to your experiences with myositis and include a very brief explanation about myositis, the importance of awareness, and a little about MSU. We are happy to help you with wording. Just contact us!

  • Contact your local newspaper to run an awareness article

    Contact a local reporter and request they write an article about Myositis Awareness Month that includes your personal experience with myositis and a little about MSU and how we help Empower the Myositis Community. Contact us for help with wording.

  • Send a letter to the editor of print and online newspaper

    Write and share your myositis story and include some information about MSU, which can be found in the Awareness Toolkit, or contact us for help with wording.

    Submit to several local print and online publications. Be sure to check their guidelines prior to submission.

  • Reach out to local and state government officials

    An important way to help promote awareness and understanding is to ensure those who make policies affecting our care are well-educated about myositis and how it impacts our lives.

    Contact your local, state, and federal officials to schedule a meeting. Share your personal myositis story along with how they can contact MSU for more information.

    Order information cards and brochures to provide them with during your meeting.

    Find your elected officials
  • Organize virtual workplace gathering

    In just 30 minutes, you can start off your colleagues’ day by organizing a simple breakfast of bagels/muffins and juice, have a brown bag luncheon, or another creative virtual idea.

    Set up a video conference and enjoy a lunch and learn where you can educate your co-workers about myositis and how it affects you personally, and tell them about why you support MSU and ask if they will make a donation to help empower the myositis community.

  • Virtual House Party

    A virtual house party is an online event using video conferencing. Invite people you know and organize a featured event during this time, like watching movies, playing games, holding contests, or other creative ideas. During this, talk to your participants about myositis and how it affects your life, and share information about MSU and ways they can support the work we are doing.

  • Share your content with hashtags, #MyositisLIFE

    When posting to social networking sites, utilize the some of the below hashtags to build upon community-wide myositis awareness content. Learn more about using hashtags in social content.

    #MyositisAwareness, #MyositisWarrior, #TheStruggleIsReal, #MyositisLIFE.

  • Share MSU Brochures, Information Cards, and other materials

    Order MSU brochures and information cards through our Shop and hand out to family members and friends, local businesses, physicians, and other healthcare facilities you visit.

    This is a perfect time to ask if they would support MSU with a donation, either online, via check payable to MSU, or through your own MSU fundraiser.

  • Request Myositis Awareness Month Proclamations

    Request a proclamation from your Governor and/or Mayor of your City.

    Below you will find a download for the proclamation guide and a list of web links for each State, making the request process easier this year.

    The proclamation sample wording and list of State contacts are also available in the Awareness Toolkit.

    Download Proclamation Guide Download State Web Resources

Login or Register for your free MSU membership

Register for your free MSU membership and receive email newsletters and updates, and you will have your very own MSU Myositis Network account and profile with the ability to connect with other members. We do not share any personal information with third parties, nor do we spam.

ROAR by fundraising!

Create your own personal fundraiser for MSU

Facebook Fundraiser

Creating your own MSU Myositis Fundraiser on Facebook is so easy! Visit the MSU public Facebook page fundraiser section, and under the header graphic/video, click the blue “Raise Money” button to get started.

Then, customize the image and wording to make it personal to you. Once ready, complete and start sharing. Share your fundraiser, with updates. often.

Create a Facebook Fundraiser

Create your MSU Fundraiser

Not on Facebook? Have fun and educate your family members and friends with a customized fundraiser on our new platform!

To get started, click the button below. Choose from the options and get creative with your campaign. We are here if you have any questions. Email info@understandingmyositis.org Have fun with the fundraiser, but remember to share, share, share!

Create a Personal Fundraiser

Make an online donation

As a nonprofit, we rely on donations for the work we do.

We hope you will make a contribution. We appreciate your support!

Donate for Awareness Month

Donate by check

If you would like to make your donation by mailing a check, please make your check payable to MSU and mail to:

9125 N. Old State Road,
Lincoln, DE 19960

If you would like to make the donation in honor of or in memory of your loved one, please include a note with the information.

© 2022 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.

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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