The TSC Alliance recognizes parents and young adults often face many educational and school-related difficulties. The first step in becoming an advocate is understanding your child’s legally protected rights.

The Individuals with Disabilities Education Act (IDEA) is a federal law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children. For a more in depth understanding of your child’s educational rights and to learn about the process of receiving appropriate services and accommodations, download the navigation guide for the school-age years of TSC.

Navigating the educational journey with TSC can be overwhelming, but there are resources and support available to assist in the process through the TSC Alliance.  Whether you are looking for local resources, need support during the Individualized Education Program (IEP) process, have questions about a 504 plan or are looking for information and resources for teachers and school administrators, our trained staff and volunteers can provide guidance on education issues and training for local school districts on how learning is unique for people with tuberous sclerosis complex (TSC).

If you would like help navigating educational resources for someone with TSC, please start by completing the IEP Intake Form. We are committed to responding to all requests within 48 hours (about two business days).

If you don’t see your concerns listed here, please email Shelly Meitzler and Elizabeth Skufca at support@tscalliance.org.

Educator Mentor Program

The Educator Mentor Program (EMP) was developed to support school systems in understanding the learning needs of children with TSC. The EMP includes administrators, therapists, physiologists, and teachers from pre-kindergarten to college level having experience with TSC. They provide one-on-one support to any professional in the school system needing education and support in understanding the educational complexities of TSC.

For more information contact Shelly Meitzler and Elizabeth Skufca at support@tscalliance.org or (800) 225-6872.

Ask an Advocate series

The Ask an Advocate webinar series occurs every two months on the second Monday at 8 pm ET. Join Director, Outreach and Support Shelly Meitzler and Community Programs Manager Elizabeth Skufca for an ask an advocate session. Bring your questions about evaluations, Individualized Education Programs (IEPs) or 504 plans. 


For the full schedule of upcoming Ask an advocate sessions, click here.

Thank you to our TSC Navigator supporters:

Northstar Sponsors

  • Jazz Pharmaceuticals 
  • UCB, Inspired by patients. Driven by science.

Cardinal Sponsors

  • Neurelis
  • Nobel Pharma

Directional Sponsor

  • Noema