Who We Are

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  • Who we are

    We are a 501(3)c charitable organization. We are a volunteer group of individuals committed to provide support, information, education and advocacy to individuals with PKU and other inborn errors of metabolism.
  • Where We Are

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  • Where we are

    We are located at:
    2310 Homestead Rd Suite C1, Box 154 Los Altos, CA 94024.

  • History

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  • History

    Established in 1981, we were known as PKU Parents of California. In 2005, we changed the name to the California Coalition for PKU and Allied Disorders in order to provide support to individuals with genetic IEM’s.
  • Our Mission

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  • Our Mission

    Our Mission is to provide support to all families living in California who are involved with or affected by PKU and/or Allied Disorders.

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  • Info

    Welcome

    to the California Coalition for PKU and Allied Disorders (CCPKUAD)
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    14

    March
    2018

    Happy New Year everyone!  We hope you had a happy and restful holiday season.  Just a few things in case you missed our last 2017 newsletter and a few updates.   Let’s let 2018 be a great year for education in the PKU and Allied Disorders community!

     

    Save the Dates
    Our next Bubble Run is tentatively scheduled for April 14, 2018 at the Pomona Fairplex in Pomona, CA.  Join the fun and help raise some dough!  This event helped us raise over 1000 in 2017!  Stay tuned for more details.  June 16 2018 Annual Family Day will be held in Southern CA this year!  We alternate locations North/South every year.  We are currently looking at parks in Tustin CA and should have confirmation in late January.  If you are interested in helping out, please email Diane at CCPKUAD@gmail.com.July 5-8, 2018 NPKUA Conference, Hilton Atlanta, Atlanta, Georgia. This conference is held every other year and is a great place to learn about recent breakthroughs in PKU management and research and to connect with other PKUers and their family members from across the country. We are hoping to sponsor a suite for a few hours for CA PKU patients and their families.  Click here for more information.  Discounted room rates are now available!  Registration is open

     

    Together, we thrive!
    Looking for more great low protein recipes? One of our PKUers, Laura Mellen Hart, just launched her own Youtube channel, Thriving with PKU, that will focus on low protein cooking! Congrats, Laura, and we look forward to cooking with you.

     

    Exciting News in the world of PKU enzyme!  
    Nestlé Health Science has taken an option to license the PKU enzyme developed by Codexis, a leading protein engineering company. Check out the details here.

     

    CCPKUAD is looking for new board members and volunteers
    Are you interested in becoming more involved with the California PKU and Allied Disorder community?  If so, consider joining our ranks either as a board member or as a volunteer to run or assist with our events.  At least one board position is up for a new member at the end of 2018 as I step aside to pursue some interests in my profession!

    Please email Diane at CCPKUAD@gmail.com for more details.

     

    NPKUA Patient Registry
    Are you interested in helping PKU research?  Please join the National PKU Alliance (NPKUA) patient registry.  This is a secure database that you fill out at your own pace and helps provide information on the many types of PKU to researchers and companies providing services to PKU patients.  For more information please visit their website.

     

    Fun-filled PKU/MPS/UCD weekend at The Painted Turtle 
    Our thanks to The Painted Turtle in Lake Hughes, CA for sponsoring PKU/UCD/MPS family weekend November 17-19, 2017.  The weekend was FREE to all participants and filled with horseback riding, fishing, arts and crafts, wood shop, and lots of camaraderie!  CCPKUAD provided low protein food for the weekend.  Special thanks to Cambrooke Foods for free shipping!   Fourteen PKU families attended along with several UCD and MPS families.  Click here for more information on The Painted Turtle or to donate to this wonderful non-profit.

     

    We hope to see you at the events this year!

    Sincerely,

    Diane Pytel
    President, CCPKUAD
    ccpkuad@gmail.com
    www.ccpkuad.org

    CCPKUAD is a 501(3)c non-profit organization. We are a volunteer group of individuals committed to provide support, information, education and advocacy to individuals with PKU and other inborn errors of metabolism.
    We became an organization in 1981 formed by parents and our group was formerly known as PKU Parents of California.
    In 2005 we changed the name to the California Coalition for PKU and Allied Disorders in order to provide support for other individuals with genetic IEMs. After a 4 year period of inactivity, the current group of officers resurrected the group in an effort to bring together this community and provide a much needed organization in California.
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