Attention California Residents: The registration for the 9th annual California Coalition for PKU and Allied Disorders (CCPKUAD) Family Day is now OPEN!
Come help support CCPKUAD! Do you live near Pomona, CA and want to help CCPKUAD earn easy money and have fun?? The more volunteers we have, the more money we raise! The annual Bubble Run will be held Saturday, May 13 at the Pomona Fairplex. Volunteers must be 12 years old. This is a very easy way to have fun and help a good cause. Please contact Laura Mellen (email@example.com) for information on meeting place and time!
PLEASE JOIN US FOR THE 9th ANNUAL CCPKUAD FUNDRAISER FAMILY DAY PICNIC AND MEMBERSHIP DRIVE!
SATURDAY, June 17, 2017
11 am – 2:30 pm
The Garden House at Schoup Park
400 University Ave.
Los Altos, CA 94022
Bring your friends and family! Come enjoy the fun, food, iPad raffle, games, prizes, and more! (But you must register!)
Regular and low protein lunch will be served!
Please bring any unloved unopened PKU food for our PKU Food Swap table!
Register online at goo.gl/DrbPxL OR by using coupon below
*YOU MUST PRE-REGISTER: Please mail response to:
CCPKUAD 2310 Homestead Rd Suite C1 Box 154 Los Altos, CA 94024
OR go to www.ccpkuad.org and register for the event online starting May 1, 2015! Questions? Contact Diane @ CCPKUAD@gmail.com
Name & email address: _____________________________
First name of person/people with PKU in your group: _____________
# of Adults: _____ # of Low Protein Lunches: _____
# of Children: _____ # Regular/Vegetarian lunches: ______
Mail to Diane @ CCPKUAD 2310 Homestead Rd Suite C1 Box 154 Los Altos, CA no later than 6/10/2017
PKU-friendly treats that are <1 gram of protein per cookie!
2/3 cup softened margarine or butter
1/2 cup granulated sugar
1/2 cup packed brown sugar
1 medium egg yolk (1 tbsp=15 gm)
1 teaspoon vanilla
1/3 cup (60 gm) Nestle mini semisweet chocolate chips
2 cups plus 3 tbsp (240 gm) wheat starch
1/2 tsp baking soda
1/2 tsp salt
Preheat oven to 375 degrees. Cream margarine and sugars in medium mixing bowl. Add egg yolk and vanilla, mixing well. Add chocolate chips. Stir together wheat starch, baking soda, and salt; add to creamed ingredients and mix, first with spoon, then with hands (as mixture will be quite dry) to form a clay-like dough. Drop by teaspoon onto an ungreased sheet, 16 cookies per sheet (cookies will spread while baking). Bake for 10-12 minutes. Let cool on pan slightly, then remove to cooling rack. Yeild: 54 cookies
Note: It is wise to test-bake one cookie first. Add a little more wheat starch if it spreads too much; add a little water if it does not spread enough.
Per recipe: 336 mg of phenylalanine, 7.0 grams of protein, 3374 calories
Per cookie: 6 mg of phenylalanine, 0.1 grams of protein, 62 calories
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.
Diane Pytel President/CCPKUAD