[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 563 Agreed to Senate (ATS)]

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;
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.
                                 <all>