Culinary Conference Helps PKU Patients Gain Control Over Difficult Diet

Patients with the genetic disorder Phenylketonuria — commonly known as PKU — must adhere to a highly restricted, low-protein diet. Over the course of three days this April, the Network PKU Conference presented a series of workshops, hands-on cooking demonstrations and general nutrition tutorials aimed at helping phenylketonurics gain control over their diet.

Co-sponsored by Applied Nutrition, the Children's Hospital of Denver and JWU’s College of Culinary Arts, the conference was attended by roughly 150 people from across the US and Canada, many of them older patients and their families.

Maintaining a low phenylalanine or low "phee" diet is quite a challenge. Some phenylketonurics can only eat between 5 and 10 grams of protein per day — roughly the equivalent of one egg.

In light of this, Network PKU focused on practical strategies to maintain a nutritious, varied and satisfying low phee diet. Following a summer theme, JWU chefs demonstrated soups, salads and desserts, including roasted red pepper soup, brussels sprouts slaw and pears poached in ginger and honey. A recipe book was given to every attendee, so that they might easily recreate the dishes at home.

One grateful attendee, Brenda Winiarski, a chef and mother of a PKU child, wrote to the JWU event organizers to express her appreciation: “Thank you so much for all of the time and effort that you put into making the Network PKU Conference a success.

"When our daughter Molly was diagnosed with PKU eight years ago, our world came crashing down. Her neurological integrity was at risk and what she ate (or did not eat) would greatly determine her future. Having the threat of mental retardation looming over your child's beautiful little head is a great motivator ... [and] the kitchen was where I became empowered.

"In the beginning, I had nothing to show for hours worth of labor except for a kitchen that was in a constant state of disaster. ... After many years, countless hours and tears of frustration, I finally started to have success. I even ended up in a chef training program in NYC. As a result, I can fully appreciate the effort involved in trying to come up with flavorful food for this diet.

"Staying on this highly restricted diet is a challenge for those with PKU. By helping to provide more flavorful options, you have helped those struggling with the diet. ... You have helped an underserved population experience the joy of food — a joy that most of us take for granted.”

Pictured, left-right: Amy Shaffer, Katherine Natoli, Chef Peter Henkel, Deanna Murphy, Chef Jerry Comar and Natalie Rose (Not pictured: Chef Birch DeVault)