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/
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.
- 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.
#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!
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.
- October 2 @ 7:00 pm - 9:00 pm EDT
- October 3 @ 7:00 pm - 9:00 pm EDT
- October 3 @ 7:00 pm - 9:00 pm EDT
- October 5 @ 1:00 pm - 2:00 pm EDT
- October 5 @ 7:00 pm - 9:00 pm EDT
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.
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.
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.
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 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 firstname.lastname@example.org Have fun with the fundraiser, but remember to share, share, share!
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 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.