You don’t have to navigate tethered cord syndrome alone.

Living with tethered cord syndrome can feel overwhelming. Whether you’re newly diagnosed, preparing for surgery, recovering after treatment, caring for a loved one, or simply looking for someone who truly understands, connecting with another person who has walked a similar path can make all the difference.

The TCSA One-on-One Peer Support Program connects individuals and families affected by tethered cord syndrome with trained volunteer peer support agents who have personal experience with the condition. Our agents are not medical professionals; they are peers who understand many of the challenges that come with living with tethered cord syndrome and are here to offer encouragement, understanding, and support.

What You Can Expect

Your peer support agent is someone who will:

• Listen without judgment.
• Share their own experiences, including what worked and didn’t work for them.
• Offer emotional support and encouragement.
• Point you toward reliable resources and educational materials.
• Empower you to advocate for yourself and ask informed questions of your healthcare team.
• Treat your information and experiences with full confidentiality and respect.

Each peer support relationship is unique. Some people benefit from a single conversation, while others appreciate several conversations over weeks or months. After your initial meeting, you and your peer support agent can decide together what level of follow-up feels most helpful.

What Peer Support Is Not

To ensure everyone’s safety and well-being, there are some important limits to the program.

Peer support agents do not:

• Provide medical advice or treatment recommendations.
• Interpret MRI scans, test results, or medical records.
• Recommend specific surgeons, physicians, or healthcare providers.
• Provide counseling, therapy, or crisis intervention.
• Make decisions for you or tell you what you should do.
• Replace your healthcare providers or mental health professionals.

If you are experiencing a medical emergency or a mental health crisis, please contact your healthcare provider or emergency services immediately.

Confidentiality

We understand that many conversations involve personal experiences. Your peer support agent will keep your conversations and personal information private and confidential. Conversations are never recorded, and your information will not be shared except when required to address an immediate safety concern involving risk of harm to yourself or someone else.

Who Can Request a Peer Mentor?

Our program is available to:

• Adults living with tethered cord syndrome
• Parents and caregivers of children with tethered cord syndrome
• Family members supporting a loved one with tethered cord syndrome

When possible, we’ll match you with a volunteer whose lived experience is similar to your own.

How the Process Works

1. Complete the online Peer Support Request Form.
2. A TCSA Peer Support Coordinator will review your request.
3. We’ll carefully match you with an appropriate volunteer peer support agent.
4. You’ll receive an introductory email connecting you with a matched one-on-one agent.
5. Together, you’ll schedule your first conversation and decide what type of ongoing support works best for you.

Ready to Get Started?

Complete the Peer Support Request Form below to be matched with a volunteer peer support agent.