The Transverse Myelitis Association is a nonprofit founded by individuals whose passion for advocating for the disorder is deep-seated.
All five of the families who have worked to establish it have been directly affected by transverse myelitis. In a time with no internet, no support groups, and no medical centers that specialized in the disorder, they truly felt isolated and alone in their pain. You can read their full inspiring story here. The founders’ goal is to make the journey through diagnosis easier for you than it was for them.
The association now works both in the United States and abroad providing support, funding research, and increasing awareness of numerous rare neuro-immune disorders. These include:
- Acute Disseminated Encephalomyelitis (ADEM),
- Neuromyelitis Optica Spectrum Disorder (NMOSD),
- Optic Neuritis (ON),
- Transverse Myelitis (TM),
- and Acute Flaccid Myelitis (AFM), a unique form of TM.
Since their establishment in 1994, the organization has made great strides for the neuro-immune community. If you haven’t heard of them yet, it’s about time you found out how they can help you!
Here’s what they do:
- Act as a resource for the newly diagnosed who don’t know where to turn
- Provide information to the neuro-immune disorder community as a whole through their website, newsletter, blog, and Ask The Expert Podcast Series
- Host educational events including the symposia and workshops
- Host events focused purely on improving the quality of life of patients such as their annual family camp
- Form local support groups for individuals around the world to connect with each other
- Support the post-residency training of clinicians who specialize in neuro-immune disorders through the James T. Lubin Clinician Scientist Fellowship
- Provide grants to fund novel pilot research
Want to be included? It’s 100% free to join.
They currently have 11,500 members from more than 80 countries around the world, and you could be the next in this growing community. Members include patients, caregivers, medical professionals, and advocates. They all receive exclusive benefits like:
- Access to an always up-to-date information network
- The opportunity to hear about and participate in the latest research (Currently, they’re looking for patients to join the first large-scale North American study for Pediatric Transverse Myelitis where participants will be followed by an electronic survey)
- Inclusion in an online health registry
- The ability to network with thousands of others affected by disorders like yours and the medical professionals working to improve your experience
The goal is empowerment, improvement, and strength. Visit the Transverse Myelitis Association website for more information about their multitude of support programs. Because even though we have the internet now, the web can be huge and hard to navigate. This association brings all of the resources you need to one place and provides a community of friends to help you on the journey.