Brenda Winiarski, founder and chef of Cook For Love, and Michelle Hobbs, National PKU News board member, had more than 80 people at their Phlexi-Phe Meal Planning session at the NPKUA conference on July 7th. Participants got to see (and taste!) several delicious Cook For Love recipes, including: Kentucky Fried…
PKU News and the National PKU Alliance are pleased to release a video produced by PKU Advocate Kevin Alexander that highlights the reasons we need to pass the Medical Nutrition Equity Act. Please share this video and message with your friends, family, and most importantly, your legislators. If you or…
We spend a lot of time during PKU Awareness Month celebrating the universality of Newborn Screening in the U.S. Now it’s time to take the next step to ensure that everyone in our community can afford the necessary treatment for disorders detected through newborn screening, namely: medical nutrition. State-based laws…
Thanks to the efforts of community members (just like you!) ALDI, one of the fastest-growing retailers in the U.S., has joined the Partnership for PKU, providing us with values for their entire Little Journey baby food line, including formulas. This wouldn’t have happened without a HowMuchPhe.org user who took the initiative to reach…
By Cook For Love’s BRENDA WINIARSKI As we all know, calculating the phe & protein in your food is a pain. At first, it’s relatively easy: look up a food, weigh or measure it, and calculate the phe. But once you start cooking–for a child with PKU or for yourself —…
PKU News is pleased to announce the founding of RECOUNTING PKU, a living history project for adults with PKU. We invite anyone 18 and older with PKU to join us and share their experiences—the good, the bad, and the ugly—of living with PKU. PKU is strongly associated with children for several reasons: newborn…
Easter is around the corner. The traditional Easter candy is not always suitable when you are on a low protein diet, so how do you make it special for your loved one? A little toy and a book are a great place to start when filling the basket. Easter themed…
We are pleased to announce that after several years of lobbying by PKU News and countless community members, So Delicious Dairy Free has joined the Partnership for PKU as a premier partner. What Does That Mean? So Delicious is in the process of providing PKU News with the amino-acid-verified phe and protein values for its entire…
There has been a fair amount of online discussion recently about the Simplified Diet—What exactly is it? How does it work?—and so we thought was important to provide some information. First and foremost, the Simplified Diet is not something you can undertake on your own. If you’re interested in it,…
Is your state highlighted on this map? If so, it’s time to take action. The Medical Nutrition Equity Act (S. 1194 and HR. 2587) is under consideration by several key Congressional committees. These committees are determined based on what parts of the government would be affected by the bill. Co-Sponsor…