Loading ...
Sorry, an error occurred while loading the content.

Messages List

104

Marinesco-Sjogren Syndrome website

A new website is available to provide support to families affected by Marinesco-Sjogren Syndrome (MSS) (ataxia, cataracts, very small stature, and cognitive
yinger@...
Jan 24, 2001
#104
 
103

Web page

Hey you guys, Cady's web page is updated, go check it out! Http://wvnvm.wvnet.edu:80/~ncb00582. Leslie
ncb00582@...
Oct 3, 2000
#103
 
102
    susan.l.rump@...
    Jul 2, 2000
    #102
    This message has attachments
    101

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

    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
    Christopher Friedrich MD PhD
    Jul 1, 2000
    #101
     
    100

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

    ... 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
    susan.l.rump@...
    Jul 1, 2000
    #100
     
    99

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

    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
    MacPku@...
    Jul 1, 2000
    #99
     
    98

    21 y/o with PKU

    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.,
    Christopher Friedrich MD PhD
    Jul 1, 2000
    #98
     
    97

    Re: [iem-family] MCAD

    Hi - are you aware of the FOD support group? Their website is http://www.fodsupport.org/ . They also have a
    LeeKatMN@...
    Jun 29, 2000
    #97
     
    96

    MCAD

    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
    Clint Kimble
    Jun 29, 2000
    #96
     
    95

    Re: [iem-family] Mother on a mission

    PAULO & RUTH VILLELA RUTINHA@... I HAVE TWO KIDS WITH CLASSIC MSUD
    Rutinha@...
    Jun 29, 2000
    #95
     
    94

    Re: [iem-family] Mother on a mission

    Our daughter has homocystinuria, another metabolic disorder in which a protein component - in this case methionine cannot be metabolized. There are many
    Therese Waters
    Jun 29, 2000
    #94
     
    93

    Re: [iem-family] Mother on a mission

    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
    Kimandluke@...
    Jun 28, 2000
    #93
     
    92

    Re: [iem-family] Mother on a mission

    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
    MacPku@...
    Jun 28, 2000
    #92
     
    91

    Mother on a mission

    ... 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
    1TravelSavingsAlert@...
    Jun 28, 2000
    #91
     
    90

    Re: [iem-family] peculiar odors

    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,
    TESSABUG@...
    Jun 28, 2000
    #90
     
    View First Topic Go to View Last Topic
    Loading 1 - 15 of total 104 messages