Who We Are

arrow PNG
  • 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

    arrow PNG
  • Where we are

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

  • History

    arrow PNG
  • 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

    arrow PNG
  • 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.

    (Click "info" to exit this screen)

  • Info


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



    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

    11 Responses to A letter from Diane Pytel, CCPKUAD President: My experience at the NPKUA Conference in Indianapolis, 2016

    1. When someone writes an piece of writing
      he/she retains the thought of a user in his/her mind that how a
      user can understand it. Thus that’s why this article
      is amazing. Thanks!

      My blog page: http://hotelsnearme.website/

    2. manicure says:

      I’m not that much of a online reader to be honest but your
      blogs really nice, keep it up! I’ll go ahead and bookmark
      your website to come back down the road. Cheers

      Here is my webpage :: manicure

    3. BHW says:

      This web site definitely has all of the information I wanted
      about this subject and didn’t know who to ask.

    4. manicure says:

      Thank you for the good writeup. It in fact was a amusement account it.
      Look advanced to far added agreeable from you! By the way, how can we communicate?

    5. This actually answered my dilemma, thank you!

    6. The article has actually peaks my interest. Iwill bookmark your website and keep checking for
      new tips.

    7. Great post. I ‘m confronting a couple of these issues.

    8. Clark says:

      Good day very cool website!! Guy .. Excellent .. Wonderful ..
      I will bookmark your web site and take the feeds also? I
      am happy to seek out so many helpful information right
      here in the publish, we need develop more strategies on this regard, thanks
      for sharing. . . . . .

    9. a says:

      relocating … again | PKU.com

    10. Ashely says:

      It’s difficult to locate well informed folks on this issue, but you seem like you realize what you’re talking about!

    11. Cole says:

      I wanted to thank you for this excellent read!!
      I definitely loving every little touch of it I have you bookmarked to
      have a look at new stuff you post.

    Leave a Reply

    Your email address will not be published. Required fields are marked *

    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.
    WE WANT TO HEAR FROM YOU! Please click on the icons below to send us an e-mail, follow us on Twitter, and "like" us on Facebook!

    Add Us

    Email UsFacebookTwitter

    © 2010 CCPKUAD
    Theme: GC02 by GlossyCat