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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    24

    May
    2018

     

    Schedule In-District Meetings NOW!
    Members of Congress will be working locally May 28 – June 1. Please schedule a meeting
    with them in your home state to discuss the Medical Nutrition Equity Act (Senate Bill:
    S. 1194 and House Bill: H.R. 2587). Asking for their support and co-sponsorship
    locally is KEY. Did you know Senator Grassley agreed to co-lead the MNEA with Senator
    Casey after a local meeting with two PKU grandparents? He did! Local meetings make a
    difference. Don’t delay, WE NEED YOUR HELP!
    Scheduling a meeting is easy! Check out the NPKUA Medical Nutrition Equity Act page for
    step-by-step instructions. You can also go directly to our phone scripts by selecting the links below.
    YOU CAN DO IT!
    Help the NPKUA keep a pulse on advocacy activities across the country. Please email 
    katrina.swenson@npkua.org to let us know about your appointments. We can also
    connect you with other advocates in your area!
    What do I do if I’m told my Representative or Senators do not have appointments
    available?
    Let the scheduler know this issue is very important to you and you would like to meet with a local
    staff member responsible for healthcare legislation in the next several weeks.
    Need more bill info and materials to share with your U.S. Representative and Senators? Visit the
    Have questions? We have answers! Email us!
    About the Medical Nutrition Equity Act
    If passed by Congress and signed into law, the MNEA would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs to provide coverage for formulas, low protein modified foods, and prescribed vitamins for all children and adults with inborn errors of metabolism and certain digestive disorders.
    Thank you for your participation!
    National PKU Alliance, Inc. |  P.O. Box 1872 | Eau Claire, WI 54702
    Like us on Facebook    Follow us on Twitter    View our videos on YouTube    View on Instagram

    24

    April
    2018

    WHY Come to the CCPKUAD Family Day and Fundraiser?

     

    School will be done so come join the fun!
    It’s never to late to educate yourself and others about PKU and Allied Disorders!

     

    Saturday, 6/16 10AM-2PM at Centennial Park

    14722 Devonshire Ave, Tustin, CA 92780

     

    California Coalition for PKU and Allied Disorders (CCPKUAD) invites YOU to join fellow PKU and Allied Disorder families for FREE lunch, various vendors, a raffle including an iPad, a speaker, new ideas and fun for all ages!

     

    Registration is REQUIRED as we have limited space per the city. Please register online at goo.gl/Wk5MhL or use mailing coupon below. Limit 3 family members per patient.

    Questions? Please email Diane at CCPKUAD@gmail.com We hope you can join us!

    ***************************************************************************************

    Please mail this coupon by June 2, 2018 to CCPKUAD 2310 Homestead Rd Suite C1 Box 154 Los Altos, CA 94024

     

    • Registration Name (First, Last)____________________________
    • Who in your family has PKU or allied disorder and what is their age(s)?
    • How many people in your family will attend family day? ______
    • Last name and first name of attendees, separated by a comma. (Please indicate who has PKU. ie Mary Smith, PKU etc.) ______________________________________________________
    • How many attending will be children? ______
    • How many LOW-PRO meals will you need? ______
    • Address_________________________________________________
    • City, State, Zip_________________________________
    • Phone/email___________________________________

    17

    April
    2018

    Thanks to Sybil we had a great bubble run on April 14 with 24 volunteers.

    Don’t worry if you missed it!  We will keep you posted for next year’s event.

    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

    5

    March
    2018

    Join CCPKUAD at this year’s Bubble Run as we volunteer our time!  In return a monetary gift will be given to CCPKUAD for all of our hard work.

    Come have fun with us while raising money!  Click here to register.

     

    When: April 14, 2018

    Where: 7AM-Noon

    Where: Pomona

    For questions or more details, please email Sybil at ccpkuad@gmail.com

     

    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!

    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!

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