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
|Don’t miss out on our lo-pro cooking class, led by Chef Andy Broder! Chef Broder will share nutrition tips as he teaches us how to prepare a variety of delicious, easy PKU-friendly dishes. The class will also include Tiffany Amalfi, a pediatrics genetics social worker from the University of Rochester Medical Center, who will speak about PKU and how to manage it.The class is FREE but advanced registration is required. Register by clicking here or by calling 855-PKU-CALL (758-2255).
We hope to see you in Santa Monica!
WHAT: PKU-friendly cooking class taught by Chef Broder
WHO: PKU individuals and up to three family members
WHERE: The Gourmandise School
WHEN: Saturday, Oct. 8, from 10 a.m. – 2 p.m.
Thank you! Because of you, we surpassed last year’s donations for IHeartOC!
This year we raised $590!
Click here to register for CCPKUAD’s
Annual Family Day at The Painted Turtle!