```

[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 310 Introduced in Senate (IS)]

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;
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;
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, 2013, 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>
```