III 

113TH CONGRESS 

1ST SESSION S. RES. 310 

Designating December 3, 2013, as ‘‘National Phenylketonuria Awareness 

Day’’. 

IN THE SENATE OF THE UNITED STATES 

NOVEMBER 21, 2013 

Mr. ISAKSON (for himself and Ms. BALDWIN) submitted the following 

resolution; which was referred to the Committee on the Judiciary 

RESOLUTION 

Designating December 3, 2013, as ‘‘National 

Phenylketonuria Awareness Day’’. 

Whereas phenylketonuria is a rare, inherited metabolic disorder that is characterized by the inability of the body to 

process the essential amino acid phenylalanine and causes 

mental retardation and other neurological problems, such 

as memory loss and mood disorders, when treatment is 

not started within the first few weeks of life; 

Whereas newborn screening for phenylketonuria was initiated 

in the United States in 1963 and recommended for inclusion in State newborn screening programs under the 

Newborn Screening Saves Lives Act of 2007 (Public Law 

110–204; 122 Stat. 705); 

Whereas approximately 1 out of every 15,000 infants in the 

United States is born with phenylketonuria; 


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•SRES 310 IS 

Whereas the Phenylketonuria Scientific Review Conference in 

2012 affirmed the recommendation of lifelong dietary 

treatment for phenylketonuria made by the National Institutes of Health Consensus Development Conference 

Statement 2000; 

Whereas women with phenylketonuria must maintain strict 

metabolic control before and during pregnancy to prevent 

fetal damage; 

Whereas a child born from an untreated mother with phenylketonuria may have a condition known as ‘‘maternal 

phenylketonuria syndrome’’, which can cause a small 

brain, an intellectual disability, birth defects of the heart, 

and a low birth weight; 

Whereas phenylketonuria is treated with medical food; 

Whereas although there is no cure for phenylketonuria, treatment involving medical food and restricting phenylalanine 

intake can prevent progressive, irreversible brain damage; 

Whereas maintaining a strict medical diet for phenylketonuria can be difficult to achieve, and poor metabolic 

control can result in a significant decline in mental and 

behavioral performance; 

Whereas access to health insurance coverage for medical food 

varies across the United States; 

Whereas the long-term costs associated with caring for untreated children and adults exceed the cost of providing 

medical food treatment; 

Whereas scientists and researchers are hopeful that breakthroughs in phenylketonuria research will be forthcoming; 


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•SRES 310 IS 

Whereas researchers across the United States are conducting 

important research projects involving phenylketonuria; 

and 

Whereas the Senate is an institution that can raise awareness 

of phenylketonuria among the general public and the 

medical community: Now, therefore, be it 

1 Resolved, That the Senate— 

2 (1) designates December 3, 2013, as ‘‘National 

3 Phenylketonuria Awareness Day’’; 

4 (2) encourages all people in the United States 

5 to become more informed about phenylketonuria; 

6 and 

7 (3) respectfully requests that the Secretary of 

8 the Senate transmit a copy of this resolution to the 

9 National PKU Alliance, a non-profit organization 

10 dedicated to improving the lives of individuals with 

11 phenylketonuria. 

Æ 


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