Vanderbilt Kennedy Center Resources

• Families of a child or adult with Rett syndrome may need different types of services and supports at various times. To receive expert help in accessing and navigating services, call Tennessee Disability Pathfinder for information, support, or services, 800-640-4636, tnpathfinder@vumc.org.
• Children with Rett syndrome often have behaviors common to children with autism spectrum disorders. TRIAD provides in-person and online learning opportunities for families and for educators. Contact the Vanderbilt Autism Resource Line, 877-ASD-VUMC [273-8862], autismresources@vumc.org.
• The VKC Tip Sheet on Rett Syndrome provides information the syndrome as well as local, state, and national resources. Download here.
• View other VKC Services here.

Vanderbilt University Medical Center Resources

• The Center for Child Development partners with families to improve the lives of children and teens with developmental and behavioral challenges. A physician’s referral is required.
• The Junior League Family Resource Center at Monroe Carell Jr. Children’s Hospital at Vanderbilt offers a Family Health Library, free of charge and available in person, by phone, email, or fax.

National Resources

• The mission of Rettsyndrome.org is to accelerate full spectrum research to cure Rett syndrome and to empower families with information, knowledge, and connectivity. Their website includes a wealth of resources about Rett syndrome and living with Rett syndrome.
• The Rett Syndrome Primary Care Guidelines was created by the North American Rett Clinic Collaborative convened by Rettsyndrome.org under project leadership of Rett syndrome experts Mary Jones, MD and Katie Hale, RN, NP of UCSF Benioff Children’s Hospital Oakland, and Timothy Benke MD, PhD of Colorado Children’s Hospital. The guidelines will help those providing clinical and specialized care for your child with Rett syndrome. Please share this document with your child’s care team at your next visit.
• The Rett Syndrome Research Trust was launched in 2008 to drive research toward a cure for Rett Syndrome. RSRT funds more research than any other Rett organization and since 2008, RSRT has awarded $58 million to research. RSRT partners with academia and industry to develop and advance programs through the drug development pipeline. RSRT’s ultimate goal is to become obsolete – by finding a cure.

Family Stories

McKenzie is 15 years old and has Rett syndrome (RTT). Her mother and father describe her as brave, compassionate, and a fierce advocate for herself and others with disabilities. McKenzie was in kindergarten when she was officially diagnosed with RTT. Her doctors told her parents that she may lose the ability to walk and that her speech would be limited due to apraxia. McKenzie and her family had a different idea. They began searching for therapies and interventions, and found speech therapy services. Read More