Looking Back on TM Awareness Month!
In June, SRNA brought back TM Awareness Month to raise awareness and support for those affected by Transverse Myelitis (TM). Myelitis roughly translates to “spinal cord inflammation,” which can result from an infection or inflammatory cause. The term TM has been adopted to describe inflammation of the spinal cord due to a misdirected immune response, resulting in varying degrees of weakness, sensory alterations, and autonomic dysfunction (the part of the nervous system that controls involuntary activity, such as the heart, breathing, the digestive system, and reflexes). Reports describing TM date back to the 1880s, but the first known use of “transverse myelitis” is in 1931, where it was used to describe inflammatory changes across the anatomical “transverse” plane seen on autopsy. Throughout the year, we raise awareness to improve diagnosis, treatment options, and quality of life for all those affected by rare neuroimmune disorders.
At the beginning of the month, the SRNA community and supporters came together in Kansas City, Missouri for the 2023 Midwest Walk-Run-N-Roll. Thanks to the passion and hard work of volunteer hosts Angie Keck and Megan Beikman-Willis, over 90 people gathered at English Landing Park to walk, run, roll, and raise awareness for rare neuroimmune disorders. New friendships were formed as kids danced in the bubbles at the finish line, members of the 501st Legion wore their Star Wars costumes and posed for photos, and everyone devoured pancakes while the Keck and Beikman-Willis families shared their stories with rare neuroimmune disorders.
Later, we recognized TM Awareness Month with an online international two-day event called TM Together. The event brought together individuals, families, and advocates for TM for two days of education, support, and community. Participants revisited education sessions from the 2022 Pre-RNDS with Dr. Benjamin Greenberg and Dr. Michael Levy about how the nervous and immune systems relate to rare neuroimmune disorders. Live sessions included: a chat with community members and SRNA volunteers Paul Garrett and Alan Finger as they discussed raising awareness, a presentation by Lisa Jones of Alexion AstraZeneca Rare Disease on “Prioritizing You” with a focus on mental health for people diagnosed and their care partners, a Community Roundtable of people diagnosed with TM sharing their experiences, and a special Ask the Experts: Live session. Attendees also learned about TM and rare neuroimmune disorders, including an overview of TM, pediatric experiences, and how to build a healthcare team.
The SRNA team then traveled to Illinois to participate in Horizon Therapeutics’ Learn More Together Week – a week of connecting, listening, and learning about NMOSD together with Horizon, other patient advocacy groups, and people diagnosed and their care partners. SRNA’s Lydia Dubose also attended the Guthy-Jackson Charitable Foundation’s Patient Day in Chicago, a valuable time to connect with NMOSD and MOGAD community in the Midwest. Finally, at the end of the month, SRNA member Teresa Shiner is hosting an awareness and community event in Montana on June 30. Learn more about her efforts Rowing the Reservoirs for Recovery here.
Finally, many community members shared their stories for TM Awareness Month including WRNR host Angie Keck, who shared about her granddaughter Anastasia leading up to the Midwest Walk-Run-N-Roll: “TM impacts Anastasia’s mobility and functions in her daily life, but with lots of physical and occupational therapy, she is learning to cope with her abilities and move within her world. She loves electronics, swimming, playing board games, riding horses, participating in adaptive sports, reading a book while holding her cats, and going to SRNA Camp. She attends regular classes with a very supportive academic staff. While she doesn’t like missing school to go to PT, OT, and the hospital, she loves her therapists and the help that they provide her.”
Laura Murray explained her experience with TM on the SRNA blog: “Every aspect of my life has been impacted. I see how many people are unaware of what life is like for someone with a chronic illness/disability. Now that I can walk again, I see barriers on a sidewalk which would render mobility in a wheelchair impossible. I see the world with a new perspective, and I hope with more awareness, no one ever has to feel hopelessly alone with their rare neuroimmune condition.”
Terry Onderick highlighted the value of raising awareness in his This is Me video: “Since TM is so rare, it is important to me to educate people – especially clinicians. For those of us with little or no outward symptoms, people need to understand what is going on inside and our daily struggles.”
These are just a few of the many stories that were shared as a part of our This is Me campaign, the SRNA Blog, and on Facebook, Instagram, Twitter, and LinkedIn.
As TM Awareness Month draws to a close, we celebrate the success of the collective efforts made by the rare neuroimmune disorders community to raise awareness and build support for individuals and families affected by the disorder. We hope you will join as we continue raising awareness for TM and all rare neuroimmune disorders throughout the year. We encourage everyone to join us in this effort and help create a more informed and supportive community for all those impacted by rare neuroimmune disorders. Together, we are stronger.
