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, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Leslie Greenfield, volunteer Family Empowerment Representative, Freehold NJ
[email protected] 1-732-462-8476
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.
NJ Rett Syndrome Center - Rutgers New Jersey Medical School
Co-Directors: Dr. Jeffrey Kornitzer (pediatrics) and Dr. Erin Feinstein (adults)
This center accepts all major insurances and all NJ Medicaid. All children and adults with insurance or Medicaid can have comprehensive genetic testing without any prior authorizations or out of pocket costs.
State Agencies & Resources
Local Service Agencies
New Jersey Department of Health
The DOH, via Family Health Services, offers Special Child Health Services (SCHS) to assist families caring for children with complex, long-term medical and developmental disabilities. SCHS also has statewide referral networks that provide comprehensive diagnosis, treatment, patient and family education, and counseling for children and adults living with disabilities.
Special Child Health Services Registry
This is a confidential record of infants and children who have birth defects and special health care needs. Individuals aged birth through 21 years with any chronic medical condition are included in the Registry. The Registry serves as the primary link to case management services. Children may be registered by medical professionals, SCHS case management units and early intervention service providers.
Division of Development Disabilities
Dream Factory of Jersey Shore
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.
Department of Human Services
Managed Long-Term Services and Support
This is a waiver program to expand home and community-based services that does not take parental or sibling income into consideration. The website explains services provided and the application process.
Catastrophic Illness in Children Relief Fund
This fund can provide financial assistance. If medical expenses are more than 10% of your income, this fund may reimburse you for most of the expenses. This has come in useful for families who need a converted van. The website lists qualifications and application process.
Medical Personal Care Assistant Program (PCA)
This is an optional state assistance program offered to Medicaid recipients who need assistance with aspects of daily living. In order to qualify, recipients must be on Medicaid plan A or G, have a doctor’s order and have a documented need for assistance. PCA services must be preauthorized by the Division of Disability Services.
State Health Insurance Assistance Program (SHIP)
State Health Insurance Assistance Program (SHIP) SHIP provides free help to New Jersey Medicare beneficiaries who have problems with their health insurance such as questions about benefits, claims and supplement policies (known as Medigaps). Counselors provide assistance in dealing with claims and in evaluating health insurance options. Counseling is free of charge.
Department of Public Education
Department of Public Education the DOE ensures that students with disabilities receive appropriate educational services to enable them to achieve the same goals established for all students.
Transition to Adult Services
Statewide Parent Advocacy Network (SPAN)
SPAN provides information, training and technical assistance for youth, their families and other professionals to support informed and effective transition from school to adult life. Services include workshops, publications, and technical assistance for students with an IEP or 504 accommodation plans.
Planning for Adult Life
Planning for Adult Life Planning for Adult Life is a Division of a Developmental Disabilities-funded initiative for New Jersey youth with intellectual and developmental disabilities ages 16-21 and their families, to assist them in preparing for the transition to adulthood.
New Jersey Department of Education
The DOE has transition resources. Transition is a formal process of long-range cooperative planning that will assist students with disabilities to successfully move from school into the adult world. The website contains information on understanding what to do, and how to do it. For additional assistance with transition issues, please contact Mr. Bob Haugh or Mr. Bill Freeman .
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Rocking Horse Rehab
Rocking Horse is a pediatric rehabilitation and family wellness center specializing in equine assisted therapies along with alternative and traditional therapeutic programs. It is located in West Orange, NJ.
Legal Resources & Information
Disability Rights NM
Disability Rights New Mexico – DRNM – is a private, non-profit organization whose mission is to protect, promote and expand the rights of persons with disabilities. We are the designated protection and advocacy program for New Mexico, and as such we have authority under federal law to pursue legal, administrative and other remedies on behalf of persons with disabilities.