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Arc and Baby's First Test

The Arc of Illinois issues of the day from the desk of Tony

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The Arc of Illinois

The Arc of Illinois is a state chapter of The Arc

of the United States. The Arc of Illinois is committed to empowering persons

with disabilities to achieve full participation in community life through

informed choices.

Leaders in The Arc:

Just a reminder there is still time to send me

your ideas about possible new legislation for next year's legislative session.

Here is a new resource about newborn screening for

parents and others.

Tony auski

New Resource BabysFirstTest.org Informs Parents

and Public about Newborn Screening

Genetic Alliance Launches Vital Newborn Screening

Resource

WASHINGTON, DC – September 7, 2011 – Baby’s

First Test will increase awareness and knowledge of newborn screening and better

inform the decision-making process of newborn screening stakeholders, including

new parents and healthcare providers across the country. Genetic Alliance

launched this new resource today.

Newborn screening has been available for nearly

four decades. However, many parents are unaware of the specific conditions for

which babies receive screening in their state, how screening takes place and who

to contact for more information. Baby’s First Test will serve as a

comprehensive guide for many aspects of newborn screening, including conditions

covered and what to do in case of a screen positive test result. Sharon Terry,

president and CEO of Genetic Alliance notes, “this site aims to support

families by promoting earlier education about newborn screening. It will also

provide a resource for healthcare providers to educate parents about what to

expect after their baby is born.â€

In 2008, the U.S. Congress passed the Newborn

Screening Saves Lives Act to expand support, research, and education

opportunities for newborn screening. As a result of this legislation, the

Genetic Services Branch of the Maternal and Child Health Bureau, HRSA, HHS

awarded a cooperative agreement to Genetic Alliance and partners to establish an

online newborn screening information resource center specifically for parents

and the public. The goal is to connect parents and healthcare providers with

resources and information relevant to the more than four million newborns

screened annually. Since receiving the award, Genetic Alliance and partners

mapped out a vision of the site based on this legislation. The process included

engagement with state and regional newborn screening programs, input from

prenatal care providers, and feedback from consumer advocacy groups. “This

launch is a fabulous culmination of a terrific community process, however it is

just the beginning for Baby’s First Test. We are excited to continue our

collaborative relationships and to build on the foundation of this site,†says

Natasha Bonhomme, project director for BabysFirstTest.org

This project has received considerable feedback

from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and

Children (SACHDNC). R. Rodney Howell, M.D., chairman of the SACHDNC notes, “It

is vital that parents and the public know the great benefits of newborn

screening. Public dialogue about caring for the children of this nation is

essential. BabysFirstTest.org, through its partnerships and social media

efforts, provides families with immediate and credible resources and provides

critical just-in-time information.â€

###

About Genetic Alliance

Genetic Alliance improves health through the

authentic engagement of communities and individuals. In this, our 25th year, we

celebrate innovation on our journey toward novel partnerships, connected

consumers, and smart services. For more information about Genetic Alliance,

visit http://www.geneticalliance.org.

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