New York

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
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Shirley Hurlburt, volunteer Family Empowerment Representative
cnyrettrep@gmail.com 1-315-447-5200

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.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

Biobanking of Rett Syndrome and Related Disorders

Visit Biobanking of Rett Syndrome and Related Disorders Website
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.  This study will be conducted at the University of Rochester.  It is led by Alex Paciorkowski, MD, PhD.

Clinics

Children's Hospital at Montefiore (CHAM)

Visit Children’s Hospital at Montefiore Website
1-347-640-2671
1-718-920-4378
This is the only center for Rett syndrome in the tri-state area and is offered through the Division of Neurology.
Email: rett@montefiore.org

State Agencies & Resources

Local Service Agencies

 Office for People with Developmental Disabilities (OPWDD)

Visit Office for People with Developmental Disabilities (OPWDD) Website

1-866-946-9733

OPWDD offers supports to children from birth to 21 who are OPWDD-eligible with a qualifying diagnosis. OPWDD services can be provided in addition to supports received through Early Intervention (EI), the education system, and the Office for Children and Family Services (OCFS).

Child Health Plus

Visit Child Health Plus Website

Child Health Plus is the state’s health insurance plan for kids. Depending on your family’s income, your child may be eligible to join either Child Health Plus A (formerly Children’s Medicaid) or Child Health Plus B. Both are available through providers throughout the state.

Revenue Support Field Office (RSFO)

Visit Revenue Support Field Office (RSFO) Website

The RSFO develops and maintains benefits and entitlements for individuals served by OPWDD. There are nine RSFOs throughout New York State.

Department of Social Services (DSS)

Visit Department of Social Services (DSS) Website

County DSS administers publicly funded social services and cash assistance programs. Families who meet income and other criteria, may be able to receive a subsidy to offset some of their childcare costs. Eligible individuals and those requesting coverage for community based long-term care (CBLTC) services should apply with their County DSS office.

The Dream Factory

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.

State Medicaid

New York State Department of Health

Visit New York State Department of Health Website

The HCBS waiver provides services that allow individuals to remain in their own home or live in a community setting. Illinois has nine HCBS waivers. Each waiver offers a different set of services.

Medicaid.gov

Visit Medicaid.gov Website

This site lists all New York Medicaid waivers.

Medicaidwaiver.org

Visit Medicaidwaiver.org Website

This site also lists New York Medicaid waivers.

Early Intervention

New York State Department of Health

Visit New York State Department of Health Website

1-518-473-7016

The Early Intervention Program (EIP) provides a variety of therapeutic and support services to children under three years of age who have a confirmed disability or established developmental delay.

Early Intervention Official (EIO)

Visit Early Intervention Official (EIO) Website

This designated official administers the local Early Intervention Program. Contact your EIO for information or to refer a child.

Education

Office of Special Education

Visit Office of Special Education Website

1-718-935-2000

This department provides services and programs for students with disabilities.

Conservatorship

NYCourts.gov

Visit NYCourts.gov Website

NYCourts has online forms for guardianship.

Transition to Adult Services

Office for People with Developmental Disabilities (OPWDD)

Visit Office for People with Developmental Disabilities (OPWDD) Website

1-866-946-9733

OPWDD works with the State Education Department, local school districts, and special education staff to assist students transitioning from school, and to help plan for the supports that will be needed in adult life. This process should start at age 15.

New York State Education Department

Visit New York State Education Department Website

1-518- 474-3852

The Education Department has information on planning for transition for your child.

Handicap Placard

New York State Department of Motor Vehicles

Visit New York State Department of Motor Vehicles Website

The DMV requires that you obtain a doctor’s signature or statement for the application.  The statement must describe the disabling condition and verify that the disability qualifies according to the law. Bring the form or statement to your issuing agency. There is no fee for a permit. The DMV does not issue the parking permits.

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

Medical Professionals

Dr. Aleksandra Djukic

Dr. Djukic is Associate Professor of Neurology at Albert Einstein College of Medicine and is the Director of the Rett Syndrome Center.
Learn More about Dr. Aleksandra Djukic

Recreation

Darien Lake

Visit Darien Lake Website

Located in Darien Center, most of the attractions are wheelchair accessible but do require a transfer from the wheelchair to the ride/attraction. See the Ride Accessibility Guide for more information.

Trail Link

Visit Trail Link Website

This site lists Wheelchair Accessible Trails in New York State.

The Buffalo Zoo

Visit The Buffalo Zoo Website

The zoo offers unique programs geared towards children with developmental disabilities.

Additional Resources

New York Rettsyndrome.org Families Facebook Page

Click and ask to join.