May is Myositis Awareness Month!
From the Heart
Join us for Myositis Awareness Month
Our “From the Heart” campaign reflects the passion and dedication of the all-volunteer MSU team, and our supporters, who work tirelessly to improve the quality of life for people living with Myositis and provide vital resources, patient-centered research, support, education, and financial assistance to those in need.
By giving from the heart, YOU can help MSU continue to make a difference in the lives of people affected by this rare group of diseases and their families. No matter the amount you can give, we thank you in advance and are grateful to have your support.
Also, join us for webinars and group discussions!
#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.
#MyositisLIFE: Weekly Sunday Clubhouse SupportJune 11 @ 7:00 pm - 9:00 pm EDT
Mindfulness Discussions with MSUJune 14 @ 1:00 pm - 2:00 pm EDT
Myositis Support Gets Moving on ClubhouseJune 15 @ 1:00 pm - 2:30 pm EDT
#MyositisLIFE: Saturday Afternoon Myositis Patient Video SupportJune 17 @ 3:00 pm - 5:00 pm EDT
#MyositisLIFE: Weekly Sunday Clubhouse SupportJune 18 @ 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.
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.
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.
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.
From the Heart fundraising!
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 email@example.com 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.
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!