Where can families affected by Down syndrome get additional information?
In addition to the information in this website, The Arc of Essex County’s Stepping Stones Programs have a wealth of knowledge. There are organizations across the country that provide information and support for families of children with Down syndrome including:
National Down Syndrome Society - 666 Broadway New York, NY 10012 (800) 221-4602 or (212) 460-9330 Web site: www.ndss.org
National Down Syndrome Congress - 1370 Center Drive, Suite 102 Atlanta, GA 30338
(800) 232-NDSC or (770) 604-9500 Web site: www.ndsccenter.org
Are there other organizations conducting research on Down syndrome?
Yes. The Lumind Foundation’s mission is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome.
What does it mean to be an advocate?
Children with Down syndrome will likely need some level of Special Education services. As a parent, it is going to be a new road for you to travel while learning the special education systems. You will learn to be an advocate for your child. As an advocate, you will be able to effectively understand and manage the special education system in your district and work effectively in order to obtain the services and supports to best meet your child’s needs. Please know you are not alone – The Arc of Essex County’s Stepping Stones Programs are here to help you. Parents often feel overwhelmed by the amount of information and time that is needed to be an effective advocate for their child. Support through attending the Stepping Stones Programs is an invaluable resource to help one become the best advocate for their child. Keep in mind that you are the team leader throughout your child’s life journey.