June is packed with Transverse Myelitis Awareness Days that have been recognized by several states and countries over the years. To recognize these important dates and further shine light on TM and the journeys of all those who have been diagnosed with this rare disorder, we at SRNA have decided to make the month of June “Transverse Myelitis Awareness Month.”
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. Having a rare disorder such as TM means you are more likely to be misdiagnosed, and some people go years without the correct diagnosis. It also means that many healthcare providers do not have experience with recognizing or treating TM. People who are diagnosed with TM often have to be their own best advocate and go to extra lengths to get the care they need. For all these reasons, awareness is an important tool for creating better outcomes for people with transverse myelitis.
How can you help to raise awareness for TM? The rare neuroimmune disorder community are some of the best advocates to be able to spread awareness, and there are several steps you can take to get involved. Below, we’ve listed five things you can do today to get involved and make a difference this Awareness Month and all year long.
Contact your legislators
One way to raise awareness is to contact your legislators. Legislators have the power to pass bills into law that will have a direct impact on people. Contact public officials and tell them your story. Tell them that you support policies that meet the unmet needs of individuals diagnosed with TM. Call on legislators to take action. Speak up and speak out to make a difference!
Take on a challenge
Another way to raise awareness is to take on a challenge. Pick something that you like doing. Do you enjoy playing sports? Take on an athletic challenge. Are you an artist? Challenge yourself to create five new pieces a day. Do you like to bake? Organize a bake sale. Make sure to share on social media why you’re taking on the challenge and how others can support you in your TM awareness journey.
Start a fundraiser
You can also start a fundraiser to help raise funds for TM research. Don’t underestimate your power to start a movement! Members of our community have done some pretty amazing things to raise money for transverse myelitis, and they’re thinking of new things to do every day. What can you do to help?
Share your story
An additional way to spread awareness is to share your story. By bringing the faces and voices of those living with TM to the forefront, we can empower our communities, researchers, physicians, and governing entities to understand this rare and life-altering diagnosis better. Share your story with us and we will feature you as part of the This is TM Me Campaign!
Spread the word!
Finally, help us get the word out about Transverse Myelitis Awareness Month! We will be posting shareable images and resources on our social media throughout the month. Help us spread awareness by sharing our social media posts and #ShareTheFacts during this month and beyond.
If you have any additional ideas for how to spread awareness for TM or want to write a blog post on how you’re raising awareness this month, please email us at [email protected]