May is National Myositis Awareness Month! Celebrate with us by helping to educate the public and healthcare community about myositis.
On average, it takes more than three-and-a-half years and five doctors to receive a correct autoimmune disease diagnosis. Myositis patients—including frantic parents of drastically weakened children—find that a great deal of damage is done during this wait.
This May, we’re using our community’s powerful voices and patient stories to shorten the wait. Raising awareness of myositis, its symptoms, and treatments could help more myositis patients and families find an accurate diagnosis sooner.
Ways to Celebrate Myositis Awareness Month
Will you join us in raising awareness of myositis by informing your friends, family, and the public about myositis? There are a few easy ways to raise awareness this May—and all year round.
- Share with family and friends and let’s get TMA on every TV in America! Do you have a Roku, Fire Stick or AppleTV? Search for the “Talk Business” app by using the hour glass and then search for “myositis” to view a 2-minute version of TMA’s Services Video on the big screen in your own living room!
- Press Release: Press Release Distribution Confirmation for The Myositis Association
- Tell your story: Take this opportunity to talk about myositis to your friends, family, colleagues, and neighbors. Share the impact of myositis and easy ways to offer support. Check out myositis patient stories for inspiration.
- Start a fundraiser: We make it easy to run your own campaign in order to raise funds for myositis awareness and support.
- Contribute to our fundraiser: Love what The Myositis Association does? Make a gift to help advance our mission and ongoing education efforts.
- Post on social media: Use your social network to spread the word about myositis. See the guide below for post ideas and hashtags.
- Call physicians: Reach out to general practitioners and other healthcare providers with information about myositis, like the Physician’s Guide to Myositis, to help with diagnosis and treatment.
- Become a member: Join us as a TMA member to help you stay up-to-date and share myositis news, research, clinical trials, and more all year long. Plus, you’ll have access to our support groups to build your own myositis community.
- Stay up to date: We’ll be posting updates and spreading awareness about myositis on our blog all month long.
Register for Our Virtual Summit
Join TMA for this exciting virtual summit on May 8, 2020, from 8 a.m. to 7:30 p.m. Eastern for the chance to learn from global myositis experts about managing your myositis.
Participate from your computer at home in virtual presentations and Q&A sessions led by leaders in the myositis community, network with others living with myositis and their care partners, and visit virtual exhibit booths to learn more about the latest technology and research in myositis.
My Myositis Tracker
Throughout Myositis Awareness Month, TMA has developed an awareness campaign including a patient empowerment tool called “My Myositis Tracker”. Throughout the month, TMA will provide tips and tricks for symptom tracking and follow-up through social media.
Download Tracker Here
Here are a list of activities taking place throughout the month:
- May 14, 2020 at 3:00 pm ET – Webinar introducing the “My Myositis Tracker” with Dr. Tom Lloyd.
- May 20, 2020 at 12:00 pm ET – Twitter chat, led by TMA’s Medical Advisory Board Chair, Dr. Rohit Aggarwal on how to improve doctor patient communication on symptoms and therapies when dealing with complex autoimmune or rare conditions.
- May 28, 2020 at 4:00 pm ET – Webinar with Dr. Tahseen Mozaffar, Dr. Namita Goyal, and Dr. Lisa Christopher-Stine on the advantages/limitations of telemedicine for the myositis population.
Spread the Word on Social Media
Use your social network to show your support and help us spread the word. Download and share our social media resources to amplify the stories of those living with myositis and their loved ones and educate your friends and family.
Download the Awareness Guide
To help you along, we pulled together a guide full of resources and information on raising awareness for myositis.
Helpful Awareness Resources
To get an overview of what myositis is and what it can entail, take a look at the following resources before getting started with your awareness campaign. You might even share these resources with physicians and other professionals through your outreach.
- About Myositis and Diagnosis
- The TMA Myositis Library
- Myositis 101: Your Guide to Understanding Myositis
- The Physician’s Guide to Myositis
Myositis Awareness Month Events
We have a lot going on at The Myositis Association this May. Many of our support groups are celebrating myositis awareness month with virtual meetings. Check out upcoming events below:
- SW Florida Support Group Meeting on May 4, 2020.
- North Carolina Support Group Meeting on May 2, 2020.
- Central PA Support Group Meeting on May 5, 2020,
- Arizona Support Group Meeting on May 7, 2020.
- TMA’s Inaugural Myositis Virtual Summit: Managing Myositis on May 8, 2020
- ID, WY, UT Support Group Meeting on May 16, 2020.
- Wisconsin Support Group Meeting on May 16, 2020.
- SE Florida Support Group Meeting on May 16, 2020.
- New Mexico/ NW Texas Support Group Meeting on May 16, 2020.
- New York City/Long Island Support Group Meeting on May 19, 2020.
- Illinois Support Group Meeting on May 23, 2020.
- TN Support Group Meeting on May, 23, 2020.
Thank you for your help and support in raising awareness for myositis. If you have any questions about what you can do to help or need additional resources, please do not hesitate to contact our team. We’re always happy to help however we can.