Highlights from ADEM Awareness Month
Thank you for joining us for ADEM Awareness Month! Every May, we come together as a community to amplify voices, share stories, and drive change for those affected by ADEM.
This month, we celebrated ADEM Awareness Month by focusing on connection, education, and community-powered awareness—because we know that no one should navigate a rare diagnosis alone.
Raising Awareness, Together
At SRNA, raising awareness about rare neuroimmune disorders like ADEM is core to what we do. Awareness leads to earlier diagnoses, better outcomes, and deeper understanding—from both healthcare professionals and loved ones.
As more people engage in sharing information and raising their voices, the world becomes a more informed, compassionate, and supportive place for those navigating these conditions. It’s also a wonderful time to find solidarity with others who are navigating similar difficult experiences, as community member Prerna Narang knows well, offering this advice to others like her who are navigating a diagnosis like ADEM:
“My one piece of advice to someone who’s been diagnosed with ADEM is to be kind to yourself. It is going to take time but there is light at the end of the tunnel.”
Community Connections
We hosted a virtual community meetup on May 15 as part of ADEM Awareness Month. These gatherings, held during each awareness month, are designed to remind us all that we are not alone. Everyone is welcome to join upcoming meetups in June and July as we continue building connections across our community.
Midwest Walk-Run-N-Roll
On Saturday, May 17, we held a regional Walk-Run-N-Roll in the Midwest. This was the third year this event took place in Kansas City, this year drawing 81 people from across the community and raising over $5,600 for SRNA!
Thanks to generous support from participants and organizers like Angie Keck and Stephanie Witt, events like this bring our community together and help power initiatives like our Peer Connect Program, Support Group Meetings, Ask the Expert podcasts, and the Rare Neuroimmune Disorders Symposium.
Local and regional awareness is just as powerful as national campaigns—and can make a meaningful difference in people’s daily lives.
If you are interested in hosting a walk in your area, click here to learn more and get involved.
Spotlighting Community Voices
We continued our tradition of centering the lived experiences of those directly impacted by ADEM.
This month, we shared Huy Tran’s story. Diagnosed with ADEM during his final year of public health studies, Huy has since navigated education, a career, and daily life while living with the condition.
“ADEM may have rewritten my story—but today, I got to share the version I choose to carry forward. Thank you so much for listening.”
Read Huy’s full blog post here.
We also shared Ashley’s story, who we showcased during last year’s Power of Community campaign. Her journey has been marked by resilience and the relentless pursuit of better quality of life, demonstrating the powerful impact of determination and support within the SRNA community. For people newly diagnosed with a rare neuroimmune disorder like ADEM, she gave this word of advice:
“My advice is to never give up on yourself. Fight hard—you’re worth it! Take advantage of all the resources provided by SRNA. You don’t have to face this alone.”
If you haven’t watched her video already, visit us here to see her story and other community stories we featured during last year’s campaign!
Coming Up: TM Awareness Month
June is TM Awareness Month—a time to share stories, raise awareness, and support those living with TM. Learn how to get involved and don’t miss our next online community meetup on Monday, June 9.
