iem-family at Yahoo! Groups

Marinesco-Sjogren Syndrome website

yinger@... — Wed, 24 Jan 2001 11:52:06 GMT

A new website is available to provide support to families affected by Marinesco-Sjogren Syndrome (MSS) (ataxia, cataracts, very small stature, and cognitive

Web page

ncb00582@... — Tue, 03 Oct 2000 14:17:08 GMT

Hey you guys, Cady's web page is updated, go check it out! Http://wvnvm.wvnet.edu:80/~ncb00582. Leslie

Re: [iem-family] 21 y/o with PKU

susan.l.rump@... — Sun, 02 Jul 2000 11:35:30 GMT

Re: [iem-family] 21 y/o with PKU

Christopher Friedrich MD PhD — Sun, 02 Jul 2000 02:59:33 GMT

You're thinking of Children's Hospital next door. We treat adults who "outgrow" CHOP's Metabolism Department at the Hospital of the University of Pennsylvania

Re: [iem-family] 21 y/o with PKU

susan.l.rump@... — Sun, 02 Jul 2000 00:44:54 GMT

... Hello - are you aware we have a clinic for adults with PKU in the Medicine Department at the Hospital of the University of Pennsylvania? ... Dear Dr

Re: [iem-family] 21 y/o with PKU

MacPku@... — Sat, 01 Jul 2000 21:25:35 GMT

Dr. Freidrich: Thank you so much for making me aware of your adult PKU clinic. My son, Daniel, has been attending St. Christopher's Hospital for Children's

21 y/o with PKU

Christopher Friedrich MD PhD — Sat, 01 Jul 2000 17:03:00 GMT

Hello - are you aware we have a clinic for adults with PKU in the Medicine Department at the Hospital of the University of Pennsylvania? Chris Friedrich, M.D.,

Re: [iem-family] MCAD

LeeKatMN@... — Fri, 30 Jun 2000 05:25:26 GMT

Hi - are you aware of the FOD support group? Their website is http://www.fodsupport.org/. They also have a

MCAD

Clint Kimble — Thu, 29 Jun 2000 19:52:42 GMT

I have a foster daughter that has MCAD. Medium Chain ACYL CoA Dehydrogenase Deficiency. Is there anyone with this disorder that cold offer some advice? She is

Re: [iem-family] Mother on a mission

Rutinha@... — Thu, 29 Jun 2000 18:27:26 GMT

PAULO & RUTH VILLELA RUTINHA@... I HAVE TWO KIDS WITH CLASSIC MSUD

Re: [iem-family] Mother on a mission

Therese Waters — Thu, 29 Jun 2000 18:27:25 GMT

Our daughter has homocystinuria, another metabolic disorder in which a protein component - in this case methionine cannot be metabolized. There are many

Re: [iem-family] Mother on a mission

Kimandluke@... — Thu, 29 Jun 2000 04:28:26 GMT

Dear Crystal - My name is Kim and I have a 6 1/2 year-old son with Isovaleric Acidemia (IVA). I know that your son has MSUD but if you want to talk to someone

Re: [iem-family] Mother on a mission

MacPku@... — Thu, 29 Jun 2000 04:28:23 GMT

Crystal: I am the co-administrator of a support listserv for the birth defect known as PKU (phenylketonuria) which is very similar in treatment to that of

Mother on a mission

1TravelSavingsAlert@... — Wed, 28 Jun 2000 23:00:19 GMT

... My name is Crystal Clack. My son has been diagnosed with Classic Maple Syrup Urine Disease. I have alot of questions and I need someone to talk to. We live

Re: [iem-family] peculiar odors

TESSABUG@... — Wed, 28 Jun 2000 22:56:24 GMT

Thank you Paul for this info. In regards to a "clinical diagnosis" she only has AS by symptoms, genetically all tests for AS have been negative(FISH,