III 

112TH CONGRESS 

2D SESSION S. RES. 563 

Designating December 3, 2012, as ‘‘National Phenylketonuria Awareness 

Day’’. 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 19, 2012 

Mr. ISAKSON (for himself and Mr. KERRY) submitted the following resolution; 

which was considered and agreed to 

RESOLUTION 

Designating December 3, 2012, 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 which 

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 was mandated by the 

Newborn Screening Saves Life Act of 2008 (42 U.S.C. 

201 note); 

Whereas approximately 1 of every 15,000 infants in the 

United States is born with phenylketonuria; 


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•SRES 563 ATS 

Whereas the 2012 Phenylketonuria Scientific Review Conference affirmed the recommendation of lifelong dietary 

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

Statement 2000; 

Whereas adults with phenylketonuria who discontinue treatment are at risk for other serious medical issues such as 

depression, impulse control disorder, phobias, tremors, 

and pareses; 

Whereas women with phenylketonuria must maintain strict 

metabolic control before and during pregnancy to prevent 

fetal damage; 

Whereas children born from untreated mothers with phenylketonuria may have a condition known as maternal PKU 

syndrome, which can cause small brains, mental retardation, birth defects of the heart, and low birth weight; 

Whereas phenylketonuria is treated with medical food; 

Whereas, although there is no cure for phenylketonuria, a 

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 coverage for medical food varies 

across the United States, and the long-term costs associated with caring for untreated children and adults far 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 563 ATS 

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, 2012, 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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