```

[Congressional Record Volume 158, Number 127 (Wednesday, September 19, 2012)]
[Senate]
[Page S6465]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

  SENATE RESOLUTION 563--DESIGNATING DECEMBER 3, 2012, AS ``NATIONAL 
                    PHENYLKETONURIA AWARENESS DAY''

  Mr. ISAKSON (for himself and Mr. Kerry) submitted the following 
resolution; which was considered and agreed to:

                              S. Res. 563

       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;
       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;
       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
       Resolved, That the Senate--
       (1) designates December 3, 2012, as ``National 
     Phenylketonuria Awareness Day'';
       (2) encourages all people in the United States to become 
     more informed about phenylketonuria; and
       (3) respectfully requests that the Secretary of the Senate 
     transmit a copy of this resolution to the National PKU 
     Alliance, a non-profit organization dedicated to improving 
     the lives of individuals with phenylketonuria.

                          ____________________
```