Family Empowerment Representatives
Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, Rettsyndrome.org
[email protected] 1-913-221-8157
Family Empowerment Representative
Julie Peden, volunteer Family Empowerment Representative,
[email protected] 1-814-657-5005
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
Natural History Study
Travel Assistance for NHS Sites – 1-781-333-1593
Marriott is working on establishing discounts for hotel near our clinical trial sites. For more information, contact Ashley Lucchese, Marriott Sales Executive [email protected]. Nearby hotels include: The Ritz-Carlton, Philadelphia, Residence Inn Philadelphia Center City, Courtyard Philadelphia Downtown.
Biobanking of Rett Syndrome and Related Disorders
The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected.
Children's Hospital of Philadelphia
Visit Children’s Hospital of Philadelphia Website
Children’s Hospital has pediatric neurologists with advanced training and experience in treating the full spectrum of pediatric neurologic disorders.
State Agencies & Resources
Local Service Agencies
Home and Community Services Information System (HCSIS)
HCSIS is a tool to locate services and providers. This directory is not comprehensive and does not necessarily reflect the availability of services. Use with your Supports Coordinator to determine which services may be best for your family.
Department of Human Services
The DHS County Assistance Office allows state residents seek assistance and services and is your point of contact with DHS.
Special Kids Network (SKN)
SKN helps children with special health care needs and disabilities get the services and support they require in order to develop to their full potential. They provide information on health care services and offer service coordination. They have eight regional coordinators who work in communities to identify service gaps and address the unique challenges of service systems.
The Dream Factory Pennsylvania
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.
Pennsylvania Department of Human Services
Person Family Directed Support Waiver
Infant, Toddler and Family Waiver
Medical Assistance (Medicaid) Financial Eligibility Application
Transition to Adult Services
To apply for a handicap placard, fill out and notarize form MV-145A including a doctor’s signature. Permanent placards are renewed in March and September of each year. You should receive a renewal approximately 60 days before expiration of the placard. Must have a disability as defined by PennDOT and be certified as having a disability by a physician.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Pennsylvania Assistive Technology
The PEAL Center
This is an organization of parents of children with special health care needs/disabilities reaching out to assist families, professionals and others who work with children with disabilities/special health care needs.