Down Syndrome legislation

[Guest guest]

For those who have not seen this yet...

The 21 Act is one of the Governmental Affairs Committee's primary federal

concerns. Please read below and make your phone call. Then pass this to

anyone

who may be interested.

Thanks

Reminder: use http://www.votesmart.org to find your legislator

CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE " 21 ACT " PACKAGE

Take Action!

Dear NDSS Advocates:

Today, Representatives and Congressional Down Syndrome Caucus Co-Chairs,

Mc Rodgers (R-WA), Van Hollen (D-MD) and Pete Sessions

(R-TX),introduced the Trisomy 21 Act of 2011 or " 21 Acts " package (HR 2695

and

HR 2696). The 21 Act package includes two important pieces of legislation,

the

Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research

Centers of Excellence Act of 2011 (HR 2695).

The 21 Research Resource Act will expand and intensify Down syndrome

programs of

the National Institutes of Health (NIH) and the Centers for Disease Control

and

Prevention (CDC) to create an infrastructure of Down syndrome tools,

including a

Down syndrome contract registry, Down syndrome research database, and Down

syndrome biobank. These research resources will further strengthen the

research

being conducted on Down syndrome across the country and better equip our

research community with the tools necessary to facilitate their research.

This

bill also establishes a Down Syndrome Consortium with NIH to facilitate the

exchange of information and make research efforts more efficient by

integrating

the perspectives of key stake holders..

The 21 Research Centers Act will create at least six Down Syndrome

Translational

Research Centers of Excellencethat provide an optimal venue and

infrastructure

translational research on Down syndrome. The bill requires NIH to publish a

research plan on Down syndrome, and update the plan every five years. This

bill

provides $6 million to support the Centers of Excellence.

FOR MORE INFORMATION click here

ACTION NEEDED

Please take a few minutes to call or email your Representative today to ask

them

to cosponsor 21 Act package! You can reach your Representative by calling

the

Capitol Switchboard at 202-224-3121. We have included both a script (below)

and

email/letter template to help you reach out to these offices. Please do not

hesitate to contact me or Sara Weir (sweir@...) with any questions.

Regards,

Madeleine Will, Director of the Policy Center

21 Act Package - Script/Talking Points to Call Your Representative

ADVOCATE:

Hi, my name is __________. I'm a constituent from ____ (home town) ____.

May I

please speak to the Congressman/Congresswoman's Legislative Assistant who

handles healthcare and/or disability issues?

CONGRESSIONAL OFFICE:

Let me see if XXXX is available. May I ask what you are calling about?

ADVOCATE:

Sure, I'm an individual/parent of a child/adult with Down syndrome. I would

like to discuss a bill, the 21 Act package (HR 2695/HR. 2696) that is very

important to our family.

CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT:

Hi, this is XXXX, how can I help you?

ADVOCATE:

Hi, this is ___ (your name) __ from ___ (home town) ____. I'm an

individual/parent of a child/adult with Down syndrome. I would like to

discuss

two important bills that make up the21 Act package (HR 2695/HR. 2696. I am

calling to ask my Representative to cosponsor this bill led by

Representatives

Mc Rodgers (R-WA), Sessions (R-TX), and Van Hollen (D-MD).

The first bill, the 21 Research Resource Act, will expand and intensify Down

syndrome programs of the National Institutes of Health and the Centers for

Disease Control and Prevention to create an infrastructure of Down syndrome

tools, including a Down syndrome contract registry, Down syndrome research

database, and Down syndrome biobank. These research resources will further

strengthen the research being conducted on Down syndrome across the country

and

better equip our research community with the tools necessary to facilitate

their

research. This bill also establishes a Down Syndrome Consortium with NIH to

facilitate the exchange of information and make research efforts more

efficient

by integrating the perspectives of key stake holders.

The second bill, the 21 Research Centers Act, will create at least six Down

Syndrome Translational Research Centers of Excellencethat provide an optimal

venue and infrastructure translational research on Down syndrome. The bill

requires NIH to publish a research plan on Down syndrome, and update the

plan

every five years. This bill also provides funding to support the Centers of

Excellence.

CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT:

I will let my boss know that we talked and make sure that he/she takes a

look at

the bill.

(Note: When you talk to the legislative staff, you are likely to get the

response.)

ADVOCATE:

If your boss is interested in signing on as a cosponsor, you may contact:

* Kim Betz (kimberly.betz@... or 202-225-2006) in Representative

Mc Rodgers' office.

Thank you for your time. I hope your boss will consider cosponsoring this

important package of legislation. May I get your email so that I can follow

up

with you on this issue? Thanks very much!

If you are not on the NDSS action alert email list and would like to receive

these alerts and information bulletins, please subscribe at:

http://capwiz.com/ndss/mlm/signup/

National Down Syndrome Society 666 Broadway, New York, NY 10012 Phone: (800)

221-4602; Fax: (212) 979-2873

Web site: http://www.ndss.org/ NDSS National Policy Center 5505 Connecticut

Avenue, N.W. # 239 Washington, DC 20015-2601 Phone: (800) 743-5657 e-mail:

advocacy@... The mission of the National Down Syndrome Society is to be

the

national advocate for the value, acceptance and inclusion of people with

Down

syndrome.

The National Down Syndrome Society envisions a world in which all people

with

Down syndrome have the opportunity to enhance their quality of life, realize

their life aspirations, and become valued members of welcoming communities.

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