Connecting Families
Supporting parents of children with Down syndrome is at the core of the DS ACT mission. One way we do this by reaching out to medical professionals — doctors, nurses, technicians and others — to assist them, beginning when the diagnosis is delivered and continuing throughout the lifespan. We recommend the following resources:
Best Practices for health care professionals delivering a prenatal or postnatal diagnosis by Dr. Brian Skotko, in the American Journal of Medical Genetics identifies steps in a sensitive process.
The DS ACT First Call Program provides support and up-to-date information through trained volunteers across the state. If you are a healthcare provider, you can connect a new or expectant family to the First Call Program by calling our toll-free number: 888-486-8537, or by completing a brief form on our Expectant Parents and New Parents pages. Parents may access this program themselves, as well.
Printable Growth Charts and Head Circumference Charts with explanations in layman’s language have been produced by Greg Richards.
The Linda Crnic Institute is the first organization in the US with the mission to eradicate the medical and cognitive ill effects associated with Down syndrome through basic and clinical research and through clinical care. It is associated with the Anna and John J. Sie Center for Down Syndrome at the Children’s Hospital in Colorado. Both may be valuable sources of information on front-line research and care.
Proactive primary healthcare is essential to helping people with Down syndrome achieve their full potential. Healthcare Guidelines have been adopted by the Down Syndrome Medical Special Interest Group. Guidelines and checklists that can be printed and maintained in a patient’s files (as well as other information) are available on Dr. Len Leshin’s site. Dr. Leshin is a physician and the father of a son who has Down syndrome.