NDSS Legislatice Action Alert

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Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008

The National Down Syndrome Society Policy Center in Washington DC has worked very hard in getting the Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008 (Kennedy/Brownback) through congress, but they now need our help in carrying the ball across the goal line and ensuring that funds are appropriated to fulfill the bi-partisan vision of Senator Kennedy and Senator Brownback.


During the week of March 23rd.   Down syndrome organizations across the country will be participating in a phone call/e-mail blitz to our members in the US House of Representatives. We will be encouraging our representatives to sign onto the McMorris Rodgers/Holmes Norton letter to the House Appropriations Subcommittee in support of funding to provide $5 million in FY10 Appropriations to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008 (Kennedy/Brownback).


The deadline to add cosigners to the House letter is April 1st.


We are hoping to make this very easy for everyone and at the same time send a coordinated message to Washington that funding Kennedy/Brownback is an important priority for people in Missouri and Illinois.

To find your legislator go to Project VoteSmart.org and enter your zip code in the box on the left.

  • Wednesday – Information Day - Background information communicated to Down Syndrome Groups across Missouri and Illinois
  • Thursday – Ask Two Friends Day – Educate two friends outside the Down syndrome community about Kennedy-Brownback and encourage them to call or e-mail their representative. A friend could be a neighbor, teacher, clergy, co-worker, etc. or anyone you think may support our phone/e-mail blitz. Even if you tell two people about Kennedy-Brownback and they do not call, you will have helped raised awareness about Down syndrome and the political process.
  • Friday – E-mail or phone your representative. 
    To easily customize an e-mail letter to your representative click here.

OR 


 
Cut and Paste the following template script, but be sure to customize it with correct names. 
 
I am from <insert city in Missouri or Illinois>. I am calling to encourage <insert your representatives name> to sign onto the McMorris Rodgers/Holmes Norton letter to the House Appropriations Subcommittee in support of funding to provide $5 million in fiscal year 2010 appropriations to implement the Kennedy/Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008.  Funding Kennedy/Brownback will ensure that families who receive a diagnosis of Down syndrome or other genetic condition will be offered up-to-date and accurate information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options. The deadline to cosign the McMorris Rodgers/Holmes Norton letter is April 1st . Thank you for your consideration.

Sincerly,


Background Information

Improve the Quality and Availability of Information about Down Syndrome
Request: Sign the McMorris /Holmes Norton letter to the House Appropriations Subcommittee in support of funding to implement the Kennedy-Brownback Act.

Status: On October 8, 2008, President Bush signed into law S. 1820, the Prenatally and Postnatally Diagnosed Conditions Awareness Act, which was sponsored by Senator Edward Kennedy (D-MA) and Senator Sam Brownback (R-KS). Effective implementation of the new law will require Congress to enact separate appropriations of $5 million a year.
Summary: The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that families who receive a diagnosis of Down syndrome will be offered up-to-date and accurate information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options.

This act provides for:


• The development of a national clearinghouse of information for parents of children with disabilities to assist parents with either a prenatal or postnatal diagnosis;
• The expansion and further development of national and local peer-support programs for families of children with disabilities.
• The development of programs that offer referral to support services such as hotlines, Web sites, adoption registries and parent support networks and programs specific to Down syndrome and other prenatally diagnosed genetic conditions. .
Funding is now required to fulfill the bipartisan vision of Senator Kennedy and Senator Brownback. Partisan politics must not delay funding and should not be used in the pro-life versus pro-choice debate. This legislation promised to make accurate and up to date information available to parents and expectant parents.



Legislative Information