September 26, 2008
Prenatal Screening Bill Passes
To: STATE EDITORS
Contact: Wendy Bulawa, +1-978-994-1447; or Maureen Gallagher, +1- 617-449-0024
MELROSE, Mass., Sept. 26 /PRNewswire/ -- Since its introduction by Sens. Edward Kennedy (D-MA) and Sam Brownback (R-Kan) in 2005, the Prentally and Postnatally Diagnosed Conditions Awareness Act, (S. 1810) -- also known as the Kennedy-Brownback bill -- has become a rally cry from innumerable families of children with disabilities to provide support to parents and prospective parents who learn that an unborn child may have a genetic, chromosomal or physical disability. Presidential candidate John McCain, whose running mate Alaska Gov. Sarah Palin is a mother to an infant with Down syndrome, signed on as a co-sponsor to the bill earlier this month. On September 23, 2008, the Senate passed the bill, which was passed again yesterday by the US House of Representatives, marking one of the most historic moments in the lives of families of children with Down syndrome.
The measure, now passed, provides that families receiving a prenatal or postnatal diagnosis of Down syndrome or other conditions will be offered accurate and up-to-date information about the nature of the condition and also connected with support services. In addition, a registry of parents willing to adopt children with disabilities will be compiled and maintained.
Down syndrome is a genetic condition that knows no boundaries and appears within all nationalities, socio-economic classes, ethnic groups and races. Most people with Down syndrome have an extra chromosome present in all or some of their cells that alters the course of development for more than six thousand babies born each year in the United States. More than 5,000 individuals across the state of Massachusetts have Down syndrome.
Local Physician's Research Motivated Establishment of Kennedy- Brownback Bill
Dr. Brian Skotko of Children's Hospital Boston played an instrumental role in the development of the Kennedy-Brownback bill, having completed research three years ago which clearly, and alarmingly, outlined that obstetricians and genetic counselors provided too little information when delivering a prenatal diagnosis of Down syndrome to pregnant women. Mothers who have children with Down syndrome, diagnosed prenatally, reported that doctors did not tell them about the positive potential of people with Down syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups.
Further, the mothers reported that these shortcomings occurred at an emotional time when women are deciding whether or not to continue their pregnancies. Skotko's study remains the largest and most comprehensive study on prenatally diagnosed Down syndrome, to date, and is available at http://www.brianskotko.com. Skotko, who also sits on the Massachusetts Down Syndrome Congress (MDSC) Board of Directors, has a sister with Down syndrome and also co-authored the award-winning book, Common Threads: Celebrating Life with Down Syndrome (Band of Angels Press). After learning the news about the passing of the Kennedy-Brownback bill, which he has actively championed for several years, Skotko said, "Research has shown that physicians often provide an inaccurate, incomplete, and sometimes offensive picture about Down syndrome when first presenting the news to parents. This legislation sets out to change that, and I am pleased by the prospect that new and expectant parents will begin to receive up-to-date information about Down syndrome so that they can make more informed decisions."
Through its statewide 'Parents' First Call' program, the MDSC connects educated parents of children with Down syndrome with parents of babies newly diagnosed with Down syndrome while in utero or at birth. Parent volunteers make themselves and their experience available, while welcoming new parents into a community with similar experience. New parents receive a care package complete with updated information on Down syndrome, a photo calendar, complimentary one- year membership to the MDSC, connections to local support groups, and two books Babies With Down Syndrome and the award-winning book, Common Threads: Celebrating Life with Down Syndrome (Band of Angels Press).
"The passing of the bill is an historic moment for the Down syndrome community at large," said Charles Gadbois, president of the MDSC and father to a daughter with Down syndrome. "The future for physicians and expectant couples is bright as now, armed with accurate and updated information, highly personal decisions will also become more informed ones."
To gain an accurate view of Down syndrome, the Massachusetts Down Syndrome Congress (MDSC) encourages interested media and community members to join us on Sunday, October 12th at Noon at Lake Quannapowitt in Wakefield, Mass. for the annual Buddy Walk-a time when families, friends and the community at large celebrate Down syndrome and self-advocates who have risen to life's challenges and beaten the odds.
Established in 1983, the Massachusetts Down Syndrome Congress (MDSC) is a non-profit organization dedicated to education about and awareness of Down syndrome. MDSC was founded to provide information, resources and support for families, while advocating for the inclusion of individuals with Down syndrome into all aspects of the community. Additionally, the organization gathers and disseminates the most accurate and timely news relating to Down syndrome to educate the public, while actively and aggressively addressing social policy and legislatively-driven issues alongside state and local human service agencies. More information about MDSC can be found at http://www.mdsc.org, or by calling 1-800-664-MDSC.
SOURCE Massachusetts Down Syndrome Congress
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