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Support the Newborn Screening Saves Lives Reauthorization Act

December 4, 2014

Hello friends,

 

Would you be able to help us with an advocacy request from FARA President, Ron Bartek?

 

Senator Ted Cruz is one of five senators who is blocking passage of the Newborn Screening Saves Lives Reauthorization Act by putting it on hold.

 

You know how eager we all are to get our first approved treatment and make our way onto newborn screening panels around the country so we can take advantage of our best opportunity to treat FA effectively and even eliminate it in subsequent generations.

 

Below is the letter I submitted to Senator Cruz. I personalized the first paragraph of the letter drafted by Ron Bartek, and I would request that you do the same. You can send it to Senator Cruz by snail mail to: 

Senator Ted Cruz
185 Dirksen

Washington, DC 20510

 

and/or by email which you can send from his website here

 

I would also like to ask that you post it on his Facebook page here. The more ways we contact him, the more ways it gets the attention of congressional staff and members.

 

Because the Senate could complete its current session by the end of next week, I humbly request your help in contacting the senator as soon as you can.

 

Thank you very much for your consideration and support. Together we will cure Friedreich's Ataxia! 

 

LETTER TO CRUZ:

Dear Senator Cruz,

 

My name is Kendall Harvey and I am a constituent of yours from Texas. I have supported you in the past with my vote and I hope to continue to do so in the future. I am writing to urge you to allow final passage of the bi-partisan Newborn Screening Saves Lives Reauthorization Act (H.R. 1281). I have a genetic disease called Friedrich’s Ataxia. I will not go into a long explanation of what that means, but the bottom line is this: while no cure exists today, substantial progress is being made to find a cure for this debilitating disease. I believe that passage of H.R. 1281 will add important data to assist in finding a cure for this and other genetic diseases. As a new mother (my first son was born October 23, 2014) I am more passionate about doing everything in my power to stay healthy for my son and give him the best life possible - starting by keeping him happy and healthy. I strongly believe all babies born in any hospital in Texas should be screened for treatable disorders.  

 

Newborn screening is one of the nation's most successful public health programs. For over 50 years, it has been a critical state public health program that tests newborns for certain genetic, metabolic, hormonal and functional conditions not otherwise apparent at birth. More than 4 million newborns (98 percent of the total) are screened annually in the United States, and thousands of these infants are rescued from disability and death. Approximately 1 in every 300 newborns has a condition that can be detected through screening and screening detects such conditions in more than 12,000 babies each year.

 

The life-saving benefits of newborn screening are especially obvious when we consider the fact that most of the therapies currently being developed for genetic diseases will be most effective if administered before symptoms appear -- before much of the damage is done. Therefore, the detection of treatable conditions at birth via newborn screening provides the best opportunity to prevent the symptoms altogether so that the child can live a normal, healthy life.

 

Toward this goal of healthy lives for the children of Texas and the country, I urge you to allow final passage of this important legislation.  No infant should die or suffer the devastating health consequences of a condition that could have been treated or prevented if identified through newborn screening. Thank you for your attention to this critical issue. I look forward to seeing your backing of this legislation to earn my continued support for you to represent me and my family in the future.

 

Sincerely,

Kendall Harvey

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