May is ADEM Awareness Month. To shine a light on Acute Disseminated Encephalomyelitis (ADEM) and the journeys of all those diagnosed with this rare disorder and their loved ones, we will be sharing stories, resources, facts, and helpful tips during the entire month of May.
Since 1994, SRNA has supported individuals affected by rare neuroimmune disorders such as ADEM, AFM, MOGAD, NMOSD, ON, and TM. Because we —and you— do care. There is strength in numbers. If we, the public, patients, industry, regulators, policymakers, healthcare professionals, researchers, politicians, and advocacy organizations collectively fight for a brighter future for all those affected by rare diseases, we will transform the future for diagnosis and treatment of rare.
Join us as we celebrate 30 years of SRNA and look toward the future. Our 30th anniversary is not just a milestone, it is a springboard into a future where our collective vision and efforts shape a world that is more inclusive, supportive, and empowering for those affected by rare neuroimmune disorders.
Make a Difference: Six things you can do
1. Get the Word out
Our social media is filled with images and resources. Spread awareness by sharing our social media posts and #ThisIsADEM and #StrongerTogether during ADEM Awareness Month. Follow along on Facebook, Instagram, and Twitter, and join us this month in sharing facts about ADEM! Easy peasy!
2. Share your story
By bringing the faces and voices of those living with rare neuroimmune disorders to the forefront, we can empower our communities, researchers, physicians, and governing entities to understand this rare and life-altering diagnosis better. How has being part of the rare neuroimmune disorders community impacted you? How do you envision the future of the rare neuroimmune disorders community? If you could choose one word to describe what this community means to you, what would it be? Your voice matters – share your story.
3. Take on a challenge
Don’t underestimate your power to start a movement! Pick something that you like doing. Do you enjoy working out? Take on an athletic challenge. Are you an artist? Challenge yourself to create five new pieces a day. Like to bake? Organize a bake sale. Consider setting up a fundraising page, where you can share about your challenge and invite others to contribute and make a difference. Remember to share why you’re taking on the challenge and how others can support you in your ADEM awareness journey!
4. 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 you support policies that meet the unmet needs of individuals diagnosed with ADEM. In the United States, send a request to your mayor or governor for a proclamation in recognition of ADEM Awareness Month in your city or state. Speak up and speak out to make a difference!
5. Connect and learn
You are invited to ADEM Together, a special event series that we are offering in the month of May. No matter where you are in the world, we invite you to join us as we recognize and spread the word about ADEM Awareness Month. 2024 ADEM Together includes a Community Meetup, Q&A session, a Community Visioning Session, and more. Learn more and register for ADEM together.
6. Join the 30-for-30 campaign
As we celebrate our 30th anniversary, we are excited to introduce our 30-for-30 Campaign, a special initiative inviting you to engage in monthly giving for the next 30 months. Your participation goes beyond financial support—it’s a pledge to join hands with those living with these disorders, advancing research, education, and support into the next 30 years, and beyond.
Represent: Wear for rare
What will you do this #ADEMAwarenessMonth?
Email [email protected] and share your acts of awareness.
