Fwd: [FOD] Fwd: FOD--Genetic Testing comments

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If you have time to submit this it is important.

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>Hi Everyone--- Nawn asked me to send this for her to our entire List. It

>is DUE TOMORROW, Monday--PLEASE HELP!

>

>

>This is due Monday! The US Dept of Health is taking public comments on the

>issue of Fed Gov oversight of genetic testing including newborn screening.

>If you could write one or two sentences supporting comprehensive newborn

>screening for 35 disorders, it would be helpful. It's at

>

>www.edc.org/SACGT2/comment.htm#instruct under Issue #6.

>

>If you're pressed for time, you may want to copy and paste the text at the

>bottom of this email, into Issue #6.

>

>Thank you,

> Nawn

>MCAD Mom

>FOD Family Support Group

>

>COPY AND PASTE:

>

>I want comprehensive newborn screening with tandem mass spectrometry for 35

>disorders done on ALL the babies routinely. Presently, most babies are

>screened for only a half dozen disorders. About 3,000 children each year

>suffer brain damage and death because no one ran the comprehensive newborn

>screening test with tandem mass spectrometry. For four drops of blood and

>$20, this heartache is really unnecessary! Comprehensive newborn screening

>with tandem mass spectrometry done routinely, on each and every baby born in

>the USA, prevents unnecessary death and severe developmental problems. It

>saves the government tons of money and it saves a lot of grieving parents. I

>implore you to pay attention to this issue!! Please reference:

>

>www.usnews.com/usnews/issue/000117/home.htm at the bottom under " News you can

>use, " " Little-used test... "

>

>www.duke.edu/~mdfeezor/NSHome/ to understand how the technology works

>

>Comprehensive newborn screening with tandem mass spectrometry can screen for

>the following genetic, metabolic disorders:

>

>Amino Acid Disorders:

>Phenylketonuria

>Homocystinuria

>Maple Syrup Urine Disease

>Citrullinemia

>Argininosuccinic Acidemia

>*The Hyperomithinemia, Hyperammonemia, and Homocitrullinuria (HHH) Syndrome

>

>Fatty Acid Disorders:

>Medium Chain Acyl-CoA Dehydrogenase (MCAD) Deficiency

>Short Chain Acyl-CoA Dehydrogenase (SCAD) Deficiency

>Long Chain Acyl-CoA Dehydrogenase (LCAD) Deficiency

>Very Long Chain Acyl-CoA Dehydrogenase (VLCAD) Deficiency

>3-Hydroxy Long Chain Acyl-CoA Dehydrogenase (LCHAD) Deficiency

>*Carnitine Palmityl Transferase Deficiency - Type II

>Multiple Acyl-CoA Dehydrogenase Deficiency (Glutaric Acidemia Type II)

>

>Organic Acid Disorders:

>Methylmalonic Acidemias

>Methylmalonyl-CoA Mutase Deficiencies (mut- and mut+)

>Adenosylcobalamin Synthesis Defects (CblA and CblB)

>Propionic Acidemia

>Isovaleric Acidemia

>Glutaric Acidemia-Type I

>3-Methylcrotonyl-CoA Carboxylase Deficiency

>3-Hydroxy-3-Methylglutaryl-CoA Lyase Deficiency

>*Multiple CoA Carboxylase Deficiency

>*3-Ketothiolase Deficiency

>*3-Methylglutaconyl-CoA Hydratase Deficiency

>*3-Hydroxyisobutyl-CoA Hydrolase Deficiency

>*2,4-Dienoyl-CoA Reductase Deficiency

>

>Cystic Fibrosis

>

>Endocrine Disorders:

>Congenital Hypothyroidism

>Congenital Adrenal Hyperplasia

>

>Other Disorders:

>Galactosemia

>Biotinidase Deficiency

>G6PD Deficiency

>Sickling Hemoglobinopathies

>HbSS

>HbSC

>

>*Theoretically detectable in the newborn period

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