We know you’ve got a story to tell! Mark Korson, MD, Director of Education at VMP Genetics and Jacob Athoe, a student of the Boston University Genetic Counseling Program, would like to invite you to join them as they shape a registry of PKU patients and their families, and their first-hand stories about…
The short answer is YES! It is safe, and in fact, recommended. Even though research in our field cannot conclude that exercise will reduce your blood-phe levels, there is much known about the positive effects of exercise for all of us. Exercise can: Make us feel happy Lower our risk…
As you may have heard, there has been progress lately on the development of a home-based phe monitor. One company working closely with the FDA toward approval has asked PKU News to help by surveying the community to further refine the features of, and needs for, such a device. Since…
January is Birth Defects Awareness Month. PKU is not a birth defect but it does have some commonalities with birth defects. One connection with PKU is Maternal PKU Syndrome (mPKU). This is a complex condition which can occur in any pregnancy of a woman with PKU. mPKU occurs when a…
The PKU community has been working on legislative support for Medical Foods coverage for decades. In 2018, we saw significant progress in moving forward the current iteration of this legislation: The Medical Nutrition Equity Act. Looking at this map, you can see how activism by the community—sending emails and letters,…
Brenda Winarski has cooked up a Halloween Feast! If you’re looking for more ideas, check out Cook for Love’s Halloween Ideas on Pinterest. Bloody Bones Preheat oven to 425 degrees and prepare Cook For Love Pizza Dough Roll out 50g dough into a 14 inch log and knot each end….
As you may have heard, Nutricia has announced that they will unfortunately no longer be able to distribute Wel-Plan, a baking mix many of us have relied on for a long time. Nearly all of the baking recipes in Virginia Schuett’s cookbooks use it, as do many other recipes you’ve…
As Hurricane Florence approaches the East Coast of the U.S., and we remember the events of September 11, 2001, it’s worth reviewing how to be prepared for crisis situations so that we can manage PKU or other disorders at these times. While we’re trying to keep our families safe, and…
August means back to school! Fresh new pencils, markers, and paper! For parents of kids with PKU there is also worry: Will the school staff understand? Will they help my child adhere to the diet? Will the other kids make fun of my child for being different? Individuals with PKU…
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…
