PKU.com Community Discussion Forum Generation PKU Project Kuvan

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #7317
    Avatar of Philip
    PhilipW
    Member

    Hello, nMy name is Philip Welch, I am 24 years old, live in Los Angeles, CA, and I have PKU. I would like to inform everyone of a project I have undertaken which hopefully will serve as a valuable resource to those seeking more information about BioMarin

    #7393
    Avatar of Philip
    PhilipW
    Member

    A new video titled “Lauren’s PKU Story”
    has been added to
    http://www.youtube.com/projectkuvan
    This video tells the story of Lauren, a successful student and athlete who recently began taking Kuvan, and decided to do a school science fair project about her experiences.
    Visit the website to see at, and other similar videos!

    #7419

    Thanks m8 I’ll be sure to take a look at that vid.

    #7501
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Philip,
    my name is Tracie by chance is ur Dr. nDr. Richard Koch? nAnd i have a question if you do not mind? nHow many Kuvan do you have to take in one day?
    Take care, nTracie nContact info:
    tsykes@cableone.net
    Anyone feel free to e-mail me just to talk or vent or share stories of our children and the ones on the way…..
    Tracie

    #7525
    Avatar of Philip
    PhilipW
    Member

    Hello Everyone.

    I have posted a new video titled “Treating The Next Generation” posted on

    http://www.youtube.com/projectkuvan

    This video features a portion of a talk given by Heather Bausell at
    the International Teen and Adult PKU Conference in Chicago. The
    subject matter is future treatment options for PKU.

    Please Visit

    http://www.youtube.com/projectkuvan

    to view this and other PKU related video’s.

    #7604
    Avatar of Holly
    ddraigswife
    Member

    My husband and I just learned about your project durning the Fall PKU Summit. Great idea and I have watched a couple of videos already.

Viewing 6 posts - 1 through 6 (of 6 total)
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