New York
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
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
Shirley Hurlburt, volunteer Family Empowerment Representative
[email protected] 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.
Rett Syndrome Clinic-University of Rochester Medical Center
Neurology and Neurogenetics Department
919 Westfall Road, Clinton Crossings Bldg C, Suite 220, Rochester, NY 14618
Medical Leads: Dr. Alex Paciorkowski and Dr. Laurie Seltzer
Tel: 585 275 2808
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
Montefiore Medical Center/Albert Einstein College of Medicine
Medical Director: Aleksandra Djukic, MD PhD
Clinic Address: 3415 Bainbridge Ave, Floor 4, Bronx, NY 10467
Clinic Phone: (718) 920-4378
Clinic Email: [email protected]
Part of the IRSF Center of Excellence Network
CLINIC WEBSITE
State Agencies & Resources
Local Service Agencies
Office for People with Developmental Disabilities (OPWDD)
Visit Office for People with Developmental Disabilities (OPWDD) Website
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.
Early Intervention
New York State Department of Health
Visit New York State Department of Health Website
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
This department provides services and programs for students with disabilities.
Conservatorship
Transition to Adult Services
Office for People with Developmental Disabilities (OPWDD)
Visit Office for People with Developmental Disabilities (OPWDD) Website
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
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.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
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
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.
Central Park Zoo
The Buffalo Zoo
The zoo offers unique programs geared towards children with developmental disabilities.