The National PKU Alliance works to improve the lives of individuals with phenylketonuria (PKU) and pursue a cure. Programs include: research, advocacy, education and support.
In 2016, the NPKUA recruited six additional mentors to the Maternal PKU Mentor Program and hosted a two day training session following the 2016 NPKUA Conference in Indianapolis, IN. The program continues to support women with PKU who are pregnant or considering becoming pregnant. This unique program establishes a mentor-mentee relationship between two women with PKU; one being pregnant or planning to become pregnant and the other having already experienced a successful pregnancy. The program currently has 10 mentors and 13 mentees (four currently pregnant and nine in the process of conceiving or working to get their levels down before conceiving). To date, the Maternal PKU Mentor program has had five successful pregnancies. The program is part of the National PKU Alliance Adult Program and can be found at www.adultswithpku.org. "NPKUA empowers women to take control of their diet in order to have healthy pregnancies from the pre-conception diet, to the pregnancy itself and into the post-partum phase. Being able to teach women to advocate for themselves through sharing my experiences, passing on information so that they become more knowledgeable--and no matter what stage they are in--showing them the importance of diet for a healthy mom and healthy baby is one of the best gifts a woman with PKU can receive". ~Margaret, Mentor