07/27/2026
Part 2: Baltimore. Johns Hopkins. Myelitis & Myelopathy Day 2026.
What an incredible way to end this unforgettable trip.
It was so good to be back with my myelitis family…patients, researchers, physicians, clinicians, and advocates all working together to improve the lives of those of us living with neuroimmunological disorders like MS, MOGAD, NMOSD, and the condition that changed my life at 12 years old in 1999 Transverse Myelitis (TM).
TM is a rare autoimmune neurological disorder where inflammation damages the spinal cord, disrupting communication between the brain and body. It can cause paralysis, changes in sensation, pain, bowel and bladder dysfunction, and many other secondary conditions that impact quality of life.
It was wonderful seeing my incredible physiatrist, Dr. Cristina Sadowsky, from the International Center for Spinal Cord Injury Kennedy Krieger Institute. She has been such an important part of my journey. If you or someone you love is living with paralysis, I can't recommend this program enough:
https://www.kennedykrieger.org/patient-care/centers-and-programs/international-center-for-spinal-cord-injury
It was also great catching up with Pines Cabahug, who I've worked with through the American Spinal Injury Association (ASIA):https://asia-spinalinjury.org
It was also amazing to see Dr. Stephanie Van, one of my pain physicians and an absolute badass when it comes to helping people live better with chronic pain…one of my biggest enemies!
A huge thank you to:
Dr. Carlos Pardo, the Director of the Myelitis and Myelopathy Center at Johns Hopkins: https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/myelitis-myelopathy
Dr. Cristina Sadowsky, and Dr. GG deFiebre, Executive Director of the Siegel Rare Neuroimmune Association for hosting such an outstanding event. It was great seeing you ALL! If you or someone you know is affected by a rare neuroimmune disorder, SRNA is an incredible resource.
The day was packed with updates on myelitis and myelopathy research, spinal cord injury, pain management, bowel, bladder and sexual health, mental health, neuromuscular retraining, stem cell therapies, and where science is taking us next.
This trip challenged me in every way imaginable…traveling solo, pushing through chronic pain, long days, and stepping outside my comfort zone. But it rewarded me even more.
My new motto: Do It SCARED. But Just Do IT.
Thank you to every single person who followed along, checked in on me, and sent messages of encouragement. I truly read them all, and your support became my fuel. You helped me push a little farther every single day.
Science matters.
Community matters.
The race isn't over.
Rock n' Roll 💜🤘🏁♿️