Highlights from TM Awareness Month
Thank you for joining us for Transverse Myelitis (TM) Awareness Month! Every June, we come together as a community to amplify voices, share stories, and drive change for those affected by TM.
This month, we celebrated TM Awareness Month by focusing on connection, education, and community-powered awareness—because we know that no one should navigate a rare diagnosis alone.
Up ahead, take a look at some of what we accomplished together this June, from celebrating TM Awareness Month to fundraising via a Walk-Run-N-Roll to spotlighting community voices. Thank you for joining us!
Celebrating TM Awareness Month
Helping raise awareness of rare neuroimmune disorders is a vital part of what we at SRNA do. Raising awareness of TM and conditions like it leads to better health outcomes, widens understanding of what rare neuroimmune disorders are and how they operate, and ensures that people with these diagnoses and their loved ones feel understood and accepted. As more people choose to take part in awareness months and share information about these disorders, the world becomes a more informed and more accepting place.
Community Meet-Up
There are so many great ways to celebrate awareness months, like our community meet-up held on June 9th in recognition of TM Awareness Month. These meetups are held during each awareness month as a reminder that we are stronger together. People who attended the TM Awareness Month community meet-up described the value and impact of talking with others who share the experience of living with TM or another rare neuroimmune disorder:
“The best part of the community meetup was hearing stories from all the participants. It was inspiring on so many levels. Other participants were wonderful. The stories were inspiring on so many levels. I was impacted by the positive attitudes and perseverance of the others there.”
“This is the first time I communicated with other people who have transverse myelitis. It was amazing to hear from people with transverse myelitis who have different symptoms.”
Everyone is welcome to join us during our upcoming meet-up in July as we continue building connections across our community.
West Coast Walk-Run-N-Roll
The West Coast Walk-Run-N-Roll took place this month on Sunday, June 1st. 48 people showed up for the big event, and we are proud to share that this event raised $3,835!
Walk-Run-N-Roll events are amazing opportunities to gather together the community and fundraise to benefit individuals and families affected by rare neuroimmune disorders. Funds raised from events such as this allow us to support groundbreaking research and continue to offer educational programs such as our Ask the Expert podcasts or Rare Neuroimmune Disorders Symposium or support programs like the Peer Connect Program and Support Groups.
These events are also a great way to raise awareness about rare neuroimmune disorders at the regional or local level—which can make all the difference in the day-to-day lives of people with rare neuroimmune disorders.
We are so grateful to Huy Tran sharing his story and Dr. Paula Barreras for being a speaker. Their words highlighted the power of this community and impact of SRNA.
This amazing community event wouldn’t have been possible without the hard work of SRNA volunteers, Philip and Lena. We are so grateful for their love and passion for the rare neuroimmune disorders community!
Spotlighting Community Voices
Each awareness month, we spotlight the voices of those with lived experience. Through blog posts, podcasts, videos, and more, we work to ensure that no one feels alone in their journey.
This month, we shared Sophie Barry’s story. Sophie experienced the first symptoms of TM just as she was about to leave for college. She found SRNA and began regularly attending our young adult support group meetings.
She had this to say about her experience with TM:
“When people saw my recovery, they often said it was great that everything was “back to normal.” But the truth is, recovery isn’t just physical. The emotional toll of a sudden, life-altering diagnosis lingers. It’s isolating, terrifying, and often, it feels like no one else truly understands. That’s why SRNA means so much to me. Finding this organization felt like finding solid ground.”
We also shared Abby’s story, who we showcased during last year’s Power of Community campaign. Her journey highlights the evolving nature of diagnosis and the enduring spirit required to face these changes. For people newly diagnosed with a rare neuroimmune disorder, she gave this word of advice:
“Having a rare neuroimmune disorder is life-changing and can provide unique opportunities. It has allowed me to create a community with others with similar conditions and interests. I have had opportunities to get SCUBA certified, compete in Paralympic swimming, and advocate for others. I would likely not have done any of these things without my disability.”
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!
Up next: July is AFM Awareness Month! Meet others in the rare neuroimmune disorders community at our online community meetup on July 18. Also, learn how you can get involved and make an impact this AFM Awareness Month here.
