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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    5

    August
    2017
    CCPKUAD hosted Family Day 2016 at The Painted Turtle and now we would like to share this great opportunity with you, where meals will meet your needs and activities will fill your days. Please note that this is not an official CCPKUAD weekend, but an opportunity we wanted to share since we had such an out standing time at Family Day 2016 at The Painted Turtle.

    Registration is now open for the PKU, MPS, Urea Cycle Disorder Family Weekend on November 17-19 at The Painted Turtle.  We hope you enjoy this family, fun filled weekend!

    Please see the flyer below and visit http://thepaintedturtle.org/campers-families/families/application/ for more information

     

    4

    July
    2017

    Please join us for PKU Family Weekend November 17-19 at The Painted Turtle in Lake Hughes, CA.  This is a first of its kind event for our organization at this wonderful and amazing setting!  Those of you who attended CCPKUAD FAmily Day in 2016 wiill remember how awesome the place is!  The camp is open for campers ages 6-18 and their families.  Registration information and other information may be found at http://thepaintedturtle.org/camp-calendar/

    4

    July
    2017

    Thank you to all of our guests who came to CCPKUAD‘s annual family day and fundraiser, sponsored by a very generous grant from BioMarin, at the beautiful Garden House in Los Altos on June 17.  We had over 100 folks attend including 25 PKUers and 4 Vendors!   We managed to raise $697 in our raffle!  We hope you all had a good time and can come again next year when we host our event in Southern California!

    4

    July
    2017

    Thank you to all of the volunteers who participated in the Bubble Run at the Pomona Fairplex on May 13!  Over $1,300 was raised for CCPKUAD in just one day!  Special thanks to Laura Mellen and her family for organizing and coordinating the folks volunteering for CCPKUAD!  Hope to see you again next year!

    29

    December
    2016

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    Click HERE to donate now!

    20

    October
    2016

    Dear California PKU Community and CCPKUAD friends, I wanted to write and share my experience that several of our California families were also able to experience at the National PKU Alliance (NPKUA) Conference in late July in Indianapolis, IN.  The NPKUA is made up of various PKU organizations from across the country including CCPKUAD, and is focused on finding a cure for PKU.  This conference happens every other year and is always a great learning experience.  The 3 day event features the latest on PKU research in search of a cure, PKU vendors from all over the country, lectures on practical topics for managing PKU diet and an awesome kid’s zone for kids 6-13 so their parents may go learn.  This year, over 600 people attended the conference with approximately 150 of them with PKU. I wanted to call out two of our CCPKUAD board members for their bringing their awesome experience to the NPKUA conference.

    Kathryn Moseley, past CCPKUAD president, presented research showing results of PKU patients increasing neurotransmitter metabolism with large neutral amino acid (LNAA) therapy by evaluating urine melatonin, which may be a potential biomarker for metabolic control.

    Kathryn and Margaret Knight (cPKU), another CCPKUAD board member, both gave briefings on the care for women with PKU who are pregnant or thinking of becoming pregnant. The session was very well attended.

    Finally, both Kathryn and Margaret also stayed on at the end of the conference for the NPKUA Maternal Mentor Training session. This session focused on training the Maternal Mentors on their work with other PKU women, for successful pregnancies, who want to become or are pregnant. The NPKUA provides emergency assistance to women particularly in early weeks of pregnancy get Low protein food and assist with lowering PHE levels to clinical recommendations as quickly as possible. Great job Kathryn and Margaret!

    There were many exciting things to learn about in the research and we personally left believing that there will be a cure in our 10 year old cPKUer’s lifetime.  There is tremendous research in the areas of: home phe monitoring, both genetically modified probiotics and liver gene therapy as PKU treatments.

    We also enjoyed attending sessions on how to manage your PKU child during sports activities, managing the sometimes nightmare insurance process and teaching PKUers self-management skills. I encourage you to take some time and read the research on the NPKUA website – they are in the process of posting all of the slides from all of the briefings on their website at http://www.npkua.org./  If you are not an NPKUA member, I really encourage you to join as a family for $30/year.  Together, we can make a big difference and support research to find a cure for PKU.  The more families are involved, the better for all. Please feel free to contact me with any questions. I look forward to seeing you at our next event.

    Kind regards,

    Diane Pytel President/CCPKUAD

     

    Past CCPKUAD President, Kathryn Moseley  and CCPKUAD Board Member, Margaret Knight at NPKUA Conference 2016: image1

    28

    March
    2015

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    28

    March
    2015

     

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    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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