Whether you have received a diagnosis of Down syndrome, are a parent, family member or friend of an individual with Down syndrome, MADSS is here to be a resource for you.
The Madison Area Down Syndrome Society is able to support expectant and new parents with accurate, up to date and unbiased information about Down syndrome. At the time of diagnosis, you should receive a packet of information. Please contact us at firstname.lastname@example.org to request an information packet or have any questions answered.
Download the Joseph P. Kennedy Foundation's booklet: Understanding a Down Syndrome Diagnosis. The booklet was prepared with assistance from the National Society of Genetic Counselors, the American College of Medical Genetics and Genomics, the American Congress of Obstetricians and Gynecologists, the National Down Syndrome Society, and the National Down Syndrome Congress. The booklet has also been endorsed by physicians and scholars across the country as the most balanced material for expectant parents to receive following a prenatal diagnosis.
Connect with a parent mentor from the Madison Area Down Syndrome Society who has specifically been trained to talk to expectant parents and who has had a baby with Down syndrome by calling 608-692-7653 or emailing email@example.com.
If you have made a decision to continue your pregnancy, we recommend you visit Down Syndrome Pregnancy website which offers accurate, up-to-date, and balanced information for free, including the downloadable book, Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome. There is also a downloadable book that can be given to your family members called Your Loved One is Having a Baby with Down Syndrome.
If you are considering adoption services, we recommend that you visit the National Down Syndrome Adoption Network.
Additional resources from the National Center for Prenatal and Postnatal Center may be found here.
Non-invasive prenatal screening tests have become a significant source of interest among both practitioners and Down syndrome advocacy groups, especially in light of the critical need for expectant women and couples to receive balanced, accurate, and up-to-date information about Down syndrome at the point of diagnosis. The recent American College and Medical Genetics and Genomics (ACMG) Policy Statement on noninvasive prenatal screening for fetal aneuploidy now emphasizes this need. Want to learn more about the American College of Medical Genetics and Genomics policy statement on Noninvasive Prenatal Screening? The ACMG Statement on Noninvasive Prenatal Screening can be found here
For practitioners, this page summarizes ideal methods for delivering a Down syndrome diagnosis and is listed as a recommended resource in the ACMG policy statement. You may purchase booklets with this information that were developed in collaboration with American College of Medical Genetics (ACMG), American Congress of Obstetricians and Gynecologists (ACOG) and the National Society of Genetics Counselors.