Dear Friends,

Welcome to Tethered Cord Support Alliance! I’m honored to share this message with you, our incredible community of patients, families, professionals, donors, and advocates. As we work together to improve medical care and quality of life for individuals with tethered cord syndrome, we are not only filling an important need but also lifting each other and making the world a better place. 

As the mother of a child with tethered cord syndrome that wasn’t caught until later in life, I understand firsthand the struggles and heartaches that accompany searching desperately for answers, making difficult surgical decisions, and managing continued symptoms every day. We all need support from one another!

Tethered cord syndrome is a complex and widely misunderstood condition that involves many intense and heart-wrenching obstacles along the way, and no one should have to face it alone. Our organization was founded in December 2024 to raise awareness, offer resources and support, accelerate research, and create an informed, connected community where everyone affected by tethered cord can find the help they need and hope for a brighter future. 

We invite you to explore our website and utilize the resources found here, including educational information(link to page), online Tethered Tuesdays support groups(link to page), and the Peer Support Program(link to page). Whether you’re newly diagnosed, seeking long-term support, or ready to help out and give back to others, our newly developed platform is here to help you find clarity, comfort, and community.

One of the most powerful ways we grow is by learning from each other. We’d love to hear your stories: your challenges, your victories, and the moments that mattered most. (link to page) Your experiences can offer hope and guidance to others walking this path.

We also want to honor the medical professionals who have walked beside you, offered expert care, or made a life-changing difference (link to form). This gives us the opportunity to invite them to an online directory that will serve as a point of contact for new research and program information, and also as a valuable resource for others as they seek care from medical providers in all specialties who understand and have experience caring for patients with tethered cord syndrome. 

Together, we’re building more than a nonprofit: we’re building a movement rooted in connection, resilience, and shared strength.

Thank you for being part of this mission. We can’t wait to hear from you.

With gratitude,
Rebekka Smith
President, Tethered Cord Support Alliance