What is Network PKU?
Network PKU is a two day conference developed for and targeted to adolescents and adults with phenylketonuria (PKU) and their family members. “Network PKU” utilizes a culinary venue with didactic and interactive educational techniques and is the ultimate interactive low protein culinary experience.
Network PKU was designed as an educational video to increase awareness and enhance knowledge about the diet for Phenylketonuria in order to assist adolescents, teens, and adults to maintain a strong 'diet for life' attitude.
In 2004, the concept of Network PKU was expanded to become an interactive conference sponsored by Applied Nutrition and hosted by the IMD clinic at The Children's Hospital on the campus of Johnson & Wales University. The weekend featured a variety of interactive culinary and educational workshops designed to improve low protein cooking skills, increase knowledge about PKU treatment and allow attendees to share experiences of living on a PKU diet.
The overwhelming success of the 2004 event led to additional conferences in 2006, 2009 and 2011. The Network PKU Conferences have drawn attendees from all over the United States, Canada and Europe. Click here for a video regarding the 2011 Network PKU conference.
In 2013 Biomarin and the IMD Nutrition Dept. at Children’s Hospital Colorado sponsored the first regional meeting with Le Cordon Bleu in Boston, 2014 in Atlanta, and 2015 in Seattle. These regional events allowed local families the opportunity to experience Network PKU.
What is Metabolic University?
With the implementation of expanded newborn screening and other advances in the field of metabolics, the need for healthcare professionals trained in the field of inborn errors in metabolism has increased. Diagnosis and management of these diseases requires an interdisciplinary approach. Dietitians, Nurses, Genetic Counselors and Physicians play critical roles in the care of these patients. Metabolic University is targeted to professionals who are new to the field or need a refresher course in the nutrition management of inborn errors.
Through the use of lectures, group teaching, observations, and pre- and post- tests, participants of this conference gain knowledge in areas of metabolics ranging from the pathophysiology and primary offending metabolites in common disorders of metabolism, practical nutrition interventions commonly used, management issues in different disorders of metabolism, and become able to describe the use of tandem mass spectrometry in the identification of metabolites suggestive of disorders of amino acid, organic acid, urea cycle, carbohydrate, and fatty acid metabolism.
To register for the next conference please email, Laurie.Bernstein@childrenscolorado.org.
COURAGE CLASSIC - GENE TEAM
What is The Courage Classic?
A renowned cycling event in Colorado since 1989, the Courage Classic is a three-day journey fueled by individual and team fundraising efforts that benefit Children’s Hospital Colorado. More than 2,000 cyclists, hundreds of volunteers, and several sponsors and friends participate each year to support the greatest needs of Children’s Colorado. Beginning and ending in Leadville, this 157-mile course through Summit County during the summertime makes it one of the most picturesque cycling tours in the state.
The Gene Team
Laurie Bernstein, MS, RD, FADA captains this team because she is passionate about the children and families that the clinic takes care of. The Clinical Genetics and Metabolism section sees many families with various diagnoses and The Gene Team helps as many as they can. They help to provide life sustaining formula, special food, family conference attendance, camp, ropes course, and research. Last year was the 13th year and The Gene Team raised nearly $123,000. In total The Gene Team has raised more than $700,000!
Registration and Donations
For more information about the ride, including registration and donation information, click here.
METABOLIC CAMP IN WYOMING
What is Metabolic Camp?
Children with metabolic disorders and their parents have an opportunity to attend Low Pro camp at the VeeBar ranch in Laramie, Wyoming. Children with PKU, galactosemia, urea cycle disorders and methylmalonic academia enjoy horseback riding, hayrides, bonfires, an amazing metabolic race, fishing and many more adventures. The best part of the time spent at camp is watching both the children and the parents bond with each other. Mealtimes are especially rewarding when everybody tries new recipes and weighs and records what they eat, while all their peers are enjoying the same choices. The working guest ranch is a very friendly environment for families and people on special diets. The ranch is family owned and one of the owners is an adult patient with PKU and now a mom of a little girl with PKU. They are both patients at Children’s Hospital Colorado, IMD clinic.