Our mission is to provide support, education and advocacy to all families in California who are involved with or affected with Phenylketonuria (PKU) and/or Allied disorders.
CCPKUAD (formerly PKU Parents of California) was formed in 1983 to provide support to individuals and families with Phenylketonuria (PKU). PKU is a rare inherited inborn error of metabolism in which those affected cannot metabolize phenylalanine (Phe) and amino acid found in protein. The Phe builds up in the blood, crosses the blood-brain barrier and causes brain damage. It is detected through the California Newborn Screening Program which has been in effect since 1966. If detected and treatment is started shortly after birth the outcome is normal. Those born before newborn screening or those late diagnosed are severely affected with mental retardation and many reside in group homes or state institutions. The treatment is dietary which includes a medical food product to provide all the necessary vitamins, minerals and nutrients needed for normal growth without Phe. Low protein products are also needed as there is Phe in all protein. Therefore, those affected must restrict high protein foods such as meat, milk, cheese, fish, nuts, beans, chicken, fish and most grains. They must follow a Phe-restricted vegetarian meal plan with low protein products and a medical food product with all the other nutrients needed for growth except Phe. The diet is extremely difficult to follow and the low protein products are very difficult to work with. We facilitate low protein cooking classes, education on the latest products and research and also help advocate for coverage. Some families in California do not get these products covered by insurance, so we actively advocate for coverage and raise money for those in need.
Many have never heard of PKU. This is because it is an inherited rare inborn error of metabolism. It is estimated that there are only about 2,000 individuals residing in California with this diagnosis. The treatment is very difficult and expensive, but it is lifesaving. We provide support by conducting cooking classes using the low protein products, education and fundraising for to find a cure. We strive to provide these individuals a normal life, for without treatment, they will be severely mentally impaired.
We provide financial gifts to the National PKU Alliance to continue to advance research for cutting edge PKU treatments and one day a cure. We also raise money for advocacy to support the Medical Foods Act which will mandate coverage in all states for the treatment. Our top three goals are to start a family camp, further develop events especially for teens, when the diet is extremely challenging. We also want to raise money to support local research.
Currently, we are an all volunteer group consisting of parents of children and adults with PKU or individuals with PKU. We need volunteers who are willing to commit and follow through with tasks to advance CCPKUAD with our goals, such as the need to raise funds, start a successful family camp and help with advocacy, We need funds to provide medical food products or low protein food for those in need. We need programs to help parents of children with PKU adhere to dietary recommendations as well as programs for teens and adults.
We are grateful for your contribution to our organization! Thank you for supporting CCPKUAD!
Board Chair Statement
It is imperative that our organization continue to provide support to this population, raise funds for research and funds for medical food product or low protein products if needed. Availability of products is crucial for optimal outcome. We must also build our community to ensure all individuals receive treatment and the needed support to adhere to treatment recommendations.
Other Ways to Donate/Volunteer
Mail check, pay through PayPal on the website. We are looking for volunteers for fundraising, advocacy, and family camp volunteers.