Designates December 3, 2013, as National Phenylketonuria Awareness Day.
[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>
Introduced in Senate
Referred to the Committee on the Judiciary. (text of measure as introduced: CR S8465)
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