(I’m putting a video in Renee’s post Above the fold. Coincidently I just saw it on Boston.com and it plays very well with Renee’s post. It’s about a Down’s Syndrome High School student beating the odds. – promoted by EaBo Clipper)
I posted awhile ago about a Congressional candidate from Maine, who was pro-life based on knowing individuals with Down Syndrome. When pregnant, like myself now, there is a large amount of genetic testing without any counseling. I found out I’m a genetic carrier for cystic fibrosis, and eventually found out my husband isn’t through. Even if we both carried the gene, I wouldn’t abort. As I searched all about cystic fibrosis I learned the lifespan of individuals have greatly increased over the past few decades and their have been great improvement in the lives of those who live with cystic fibrosis.
It really bothers me that if I wasn’t conceived naturally, but rather in a lab dish, that as an embryo I would be genetically tested and potentially be discarded as a ‘rotten egg’ so I wouldn’t pass the gene to anyone else.
(Editors note: Begin Boston.com video Clip – not part of Renee’s Post, Renee’s post continues after the flip.)
Prenatally and Postnatally Diagnosed Conditions Awareness Act Reintroduced
The Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810) was reintroduced by Senators Edward Kennedy (D-Mass) and Sam Brownback (R-Kansas) on July 18, 2007. The bill was originally introduced in 2005 after MDSC Board member Brian Skotko MD, MPP, published research paper on how mothers received prenatal and postnatal diagnoses of Down syndrome in the American Journal of Obstetrics and Gynecology and Pediatrics. Skotko’s study found that obstetricians and genetic counselors are often insufficient in providing accurate, up-to-date information when delivering a prenatal or postnatal diagnosis of Down syndrome to expectant mothers. In 2005, MDSC members Beth Allard and son, Ben Allard, traveled with Skotko to the Capitol to testify on behalf of the bill. If successful, the bill will allocate $5 million in grants to organizations that would help provide pregnant women accurate and up-to-date information about Down syndrome when receiving a prenatal or postnatal diagnosis of Down syndrome.
The National Down Syndrome Society and National Down Syndrome Congress are following this bill and will advise the MDSC and its members on how best to advocate for successful passage of the legislation.
The Massachusetts Down Syndrome Congress (MDSC), established in 1983, is an all-volunteer, non-profit organization made up of parents, professionals and anyone interested in gaining a better understanding of Down syndrome. Its roots trace back to a group of parents, in a living room in 1983, chatting about their children with Down syndrome and how they could connect and educate families, schools and communities. Twenty-two years later, with over 1,000 members, the MDSC has an energetic Board of Directors, and a vision to ensure that every person with Down syndrome has the opportunity to reach their full potential.
To enhance on a continuous basis the lives of individuals with Down syndrome through the education and support of people with Down syndrome, their families, their friends, their teachers, and the community as a whole. To ensure individuals are valued, included, and live fulfilling lives in the community.
· To provide new parents with information, resources, and support.
· To promote the inclusion of people with Down syndrome into all aspects of the community, with particular consideration for schools and the workplace.
· To gather and disseminate accurate, up-to-date information about Down syndrome.
· To better educate the public about Down syndrome through the celebration of Down Syndrome Awareness Month and through an annual conference in order to advance the understanding of Down syndrome.
· To encourage research related to Down syndrome and quality human services.
· To address social policy issues with state and local human service agencies.
· To solicit and distribute funding for these accomplishments.
The MDSC wants to be recognized by parents, educators, people with Down syndrome, and the medical community as the preeminent organization in Massachusetts for information, networking, and advocacy for and about Down syndrome.