Thanks to generous funding by the National Down Syndrome Society (NDSS) and the Joseph P Kennedy Foundation, last week Lettercase successfully completed the largest and most credible prenatal medical outreach campaign about Down syndrome in the US.
Over the past six months, 10,000 copies of "Understanding a Down Syndrome Diagnosis" have been distributed to legislators, university leaders, Down syndrome community leaders, and medical professionals nationwide, including over 4100 booklets to practicing OB/GYNs and more than 4000 booklets to all genetic counselors and medical geneticists in the country.
The booklets represent a historic agreement between the medical and disability communities because they were created with input from the Down Syndrome Consensus Group, which includes experts from the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Down Syndrome Congress, and NDSS.
The booklets have already begun to impact society in the short time since their release. In fact the booklets were featured in the Washington Post, "On Parenting" blog by Allison Wohl, and they have been included as a recommended resource in the published NSGC guidelines on how genetic counselors should communicate a prenatal diagnosis of Down syndrome.
Lettercase CEO and the booklet author, Stephanie Meredith, says, "One expectant mother from Boston who received the Lettercase booklet told us she initially 'felt like she was drowning' after learning about a prenatal Down syndrome diagnosis, but then receiving the booklet felt like she was being 'thrown a lifeline.' These patients learning about a diagnosis are entitled to appropriate support and the up-to-date and balanced information that our booklets offer."
According to Madeleine Will, Director of the NDSS Policy Center, “Even though NDSS, Lettercase, and the Kennedy Foundation have collectively made tremendous strides in the effort to provide prenatal Down syndrome education resources, there is still much work to be done. With more advanced prenatal blood tests on the horizon for 2011 or 2012 and thousands more medical providers who need resources, advocacy for the importance of patient resources and securing additional copies for providers is critical.”