,,iii #aacth ,,congress #b;d ,session ,s4 ,,res4 #ehe ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,november #bj1 #bjad,mr4 ,isakson 7for himself and ,ms4 ,baldwin7 submitted the following resolution2 which was referred to the ,committee on the ,judiciary ,,resolution ,designating ,december #c1 #bjad1 as 8,national ,phenylketonuria ,awareness ,day04 ,whereas phenylketonuria is a rare1 inherited metabolic disorder that is characterized by the inability of the body to process the essential amino acid phenylalanine1 and which causes intellectual disability and other neurological problems1 such as memory loss and mood disorders1 when treatment is not started within the first few weeks of life2 ,whereas phenylketonuria is also referred to as ,,pku or ,phenylalanine ,hydroxylase ,deficiency2 ,whereas newborn screening for ,,pku was initiated in the ,united ,states in #aifc and was recommended for inclusion in ,state newborn screening programs under the ,newborn ,screening ,saves ,lives ,act of #bjjg 7,public ,law #aaj-bjd72 ,whereas approximately #a out of every #ae1jjj infants in the ,united ,states is born with ,,pku2 ,whereas ,,pku is treated with medical food2 ,whereas the #bjab ,phenylketonuria ,scientific ,review ,conference affirmed the recommendation of lifelong dietary treatment for ,,pku made by the ,national ,institutes of ,health ,consensus ,development ,conference ,statement #bjjj2 ,whereas the ,american ,college of ,medical ,genetics and ,genomics and ,genetic ,metabolic ,dieticians ,international published medical and dietary guidelines on the optimal treatment of ,,pku in #bjad2 ,whereas medical foods are medically necessary for children and adults living with ,,pku2 ,whereas adults with ,,pku who discontinue treatment are at risk for serious medical issues such as depression1 impulse control disorder1 phobias1 tremors1 and pareses2 ,whereas women with ,,pku must maintain strict metabolic control before and during pregnancy to prevent fetal damage2 ,whereas children born from untreated mothers with ,,pku may have a condition known as maternal phenylketonuria syndrome1 which can cause small brains1 intellectual disabilities1 birth defects of the heart1 and low birth weights2 ,whereas although there is no cure for ,,pku1 treatment involving medical foods1 medications1 and restriction of phenylalanine intake can prevent progressive1 irreversible brain damage2 ,whereas access to health insurance coverage for medical food varies across the ,united ,states1 and the long-term costs associated with caring for untreated children and adults with ,,pku far exceed the cost of providing medical food treatment2 ,whereas gaps in medical foods coverage have a detrimental impact on individuals with ,,pku1 their families1 and society2 ,whereas scientists and researchers are hopeful that breakthroughs in ,,pku research will be forthcoming2 ,whereas researchers across the ,united ,states are conducting important research projects involving ,,pku2 and ,whereas the ,senate is an institution that can raise awareness of ,,pku among the general public and the medical community3 ,now1 therefore1 be it ,that the ,senate-- 7#a7 designates ,december #c1 #bjad1 as ,national ,phenylketonuria ,awareness ,day2 7#b7 encourages all people in the ,united ,states to become more informed about phenylketonuria2 and 7#c7 respectfully requests that the ,secretary of the ,senate transmit a copy of this resolution to the ,national ,,pku ,alliance1 a non-profit organization dedicated to improving the lives of individuals with phenylketonuria4