Nutricia North America is once again proud to support the National PKU Alliance (NPKUA) and Canadian PKU and Allied Disorders Inc. (CanPKU) by sponsoring the annual Push-Ups for PKU Challenge to help raise PKU awareness and money for PKU research.
From November 3rd through National PKU Awareness Day on December 3rd, 2016, Nutricia North America will donate $5 for each video of a person or group of people doing at least 5 push-ups in support for PKU.
Get involved and challenge your friends to help spread the message of PKU Awareness!
To have your push-up video counted for a donation* be sure to post with both hashtags:
Anyone can do it! You can do the push-ups on your knees, on your toes, or even against a wall. You can even lift a can of formula in the air 5 times or get creative otherwise. So don’t delay, do your push-ups today!
You can also donate directly to these non-profit PKU organizations to help support PKU Awareness:
Nutricia does not assume and it hereby expressly disclaims any and all liability to any person or entity for any claims, damages, liability or other loss in connection with this contest. In no event shall Nutricia be liable to any person or entity for any direct, special, exemplary, indirect, incidental, consequential or punitive damages of any kind or nature whatsoever (including, without limitation, any liability for injury or other damage related in any way to participation in this contest directly or indirectly) whether in an action based on contract, warranty, strict liability, tort (including, without limitation, negligence) or otherwise, even if Nutricia has been informed in advance of the possibility of such damages or such damages could have been reasonably foreseen by Nutricia. Nutricia will cap the donation to a maximum of 600 videos during this time period or up to $3000.
November 11-13, 2016 – Harrisburg, PA
Deadline to Register: November 7, 2016
Join together for a weekend of of fun, learning and new friendships. This event is recommended for those currently on-diet or wanting to get back to the PKU diet.
The weekend will focus on learning more about PKU and improving diet management skills.
Plus…a fun trip to Hersheypark!
Friday, November 11, 2016
6:00 pm – 8:00 pm – Registration with Vendor Booths
Saturday, November 12, 2016
8:30 am – 4:00 pm – Teen & Adult Focused Education Sessions
- The Science Behind Staying on Diet – Dr. Mitzi Grant, Drexel University
- The Simplified PKU Diet – Kayt Marra, MA, RD, CDM, CCRP, University of Albany
- Communication and Personal Advocacy – Sharon Ernst, MPH, RD, CSP, FAND, Linda Leuffgan, RD & Rachel Flar, Reimbursement Specialist
BREAKOUT SESSIONS (Attend 3 Sessions)
- Contemporary Issues for Adults with PKU
- Life On Campus for Teens & Young Adults with PKU
- Meal Planning and Healthy Eating
- Finding Low Protein Foods at Your Local Supermarket
5:00 pm – 10:00 pm – Trip to Hersheypark for Dinner & Rides!(optional)
Sunday, November 13, 2016
8:30 am – 12:00 pm – Low Protein Cooking Workshop
Spend the morning in small groups learning new low protein recipes and simple techniques for preparing delicious low protein meals in minutes. Rotate through a variety of stations, each with a personal recipe guide and tasting! This workshop is going to be unique and delicious!
Don’t Wait: BOOK YOUR ROOM NOW!
1006 Briarsdale Road, Harrisburg, PA, 17111 (about $64 – $75 per night)
800 East Park Drive, Harrisburg, PA, USA 17111 Phone: (717) 545-9595 (about $150 per night)
The Hampton Inn, Harrisburg East (Hershey Area) – 1/4 mile from Conference Venue
4230 Union Deposit Rd, Harrisburg, PA 17111 Phone: (800) 644-3144 (about $130 per night)
Thank You to the National PKU Alliance for hosting a wonderful PKU conference in Indianapolis, IN on July 28-31 ,2016.
Nutricia Metabolics was proud to be a GOLD sponsor for this event that brought together over 600 people from across the US and Canada.
The best part about attending events is meeting the families and children that are touched by PKU.
We took this opportunity to present our extensive PKU line of products in a simplified fashion. We highlighted our ready-to-drink, lower volume and more flexible options with individualized tasting stations.
Conference attendees were also surprised with a sneak peak of the new PhenylAde GMP formulas coming out this fall. PhenylAde GMP Original flavor (no flavor added) was a big hit, with many people requesting follow-up samples once it becomes available in November of this year. More information about the launch of PhenylAde GMP Original will be available soon.
Available mid-November 2016!
Nutricia is pleased to share wonderful news regarding medical food coverage for families in the US military affected by a condition or metabolic disorders that requires the use of medical food.
On Tuesday, June 14th (also flag day), the US Senate in the National Defense Authorization Act authorized medical foods coverage for Fiscal Year 2017 (S.2943).
Medical foods are defined by the FDA in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee (b) (3)), as “a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.”
Nutricia North America is dedicated to improving the quality of human life through medical nutrition and truly understands the impact of such a milestone in our country. Those living with metabolic disorders such as Phenyketonuria (PKU), Maple Syrup Urines Disease (MSUD), Urea Cycle Disorders (UCD), as well as digestive disorders, such as Eosinophilic Esophagitis rely on medial food to support their health and well-being. A lack of access to these medically necessary products can be catastrophic to many families both within and out of our military.
We are proud to innovate and manufacture medical foods and thank NORD and other organizations that work tirelessly to improve access to these important resources . This is a win for our military and a step forward for the future of medial food access for all.
You are busy, so don’t let your PKU formula slow you down. Grab a store bought (protein-free) drink and add PhenylAde 60 to create a custom PKU formula you can enjoy anywhere, anytime!
Check out these great, 1-step recipes featuring PhenylAde 60.
1 serving (16.7 g) of PhenylAde 60:
Only 49 Calories
10 g protein equivalent (PE)
Low Volume (mix with only 3 fl oz of cold water)
Try It Today!
Nutritional Management of PKU:
Since all foods with protein contain phenylalanine (PHE), a person with PKU must restrict the amount and types of food containing protein. For this reason, PKU is managed with a low-PHE diet consisting of foods low in protein and a PHE-free metabolic formula.
The main sources of foods with protein allowed in the low-PHE diet are fruits and vegetables, and a limited amount of cereals and grains.
In addition to foods, individuals with PKU must drink a special PKU metabolic formula to supply the body with the necessary protein requirements the body needs for growth and maintenance, without the addition of the offending amino acid, PHE. There is also a wide range of commercially available low protein food products available for today’s PKU population. Click to View Nutricia’s Full Range of PKU products.
Nutrition management of PKU includes frequent monitoring of blood PHE levels and regular clinic visits. Blood PHE levels can be measured either at the clinic or hospital, or collected at home and mailed to the clinic for analysis. Managed blood PHE levels in persons with PKU are between 120-360 umol/L (2-6 mg/dL)1 .
Symptoms of Elevated Blood PHE Levels:
All patients with PKU, who are not started on diet immediately, will begin to build-up PHE in the blood and brain.
In an infant with classic PKU, poorly controlled PHE levels will result in irreversible brain damage. Therefore, it is essential that each infant who is diagnosed with PKU be started on a low-PHE diet to lower and maintain PHE levels within an appropriate range as soon after birth as possible.
If a child or adult previously diagnosed with PKU, and on diet, decides to discontinue the diet, he or she will begin to build up PHE in the blood, which may increase PHE levels in the brain. Over time, toxic levels of PHE in the brain can result in a change in their brain executive functions.
Executive function involves thinking skills, memory, and concentration, all of which can decline with high PHE levels. Also, an adult might feel shaky and clumsy.
If an adult is exposed to high brain PHE levels for a long enough time, IQ losses may occur. For these reasons, it is important that persons with PKU stay on the low-PHE diet for life1,2.
To learn more about the PKU diet or for assistance returning to the PKU diet plan email DietforLife@nutricia.com or call 800-605-0410.
1.. Singh RH, Rohr F, Frazier D, et al. Recommendations for the nutrition management of phenylalanine hydroxylase deficiency. Genet Med. 2014;16(2):121-31.
- Thompson AJ, Smith T, Brenton D et al.: Neurological deterioration in young adults with phenylketonuria. Lancet 1990; 336:602-605
Nutricia is a registered trademark of N.V. Nutricia.
Copyright 2015 Nutricia North America, Ic. All Rights Reserved.
PKU is Diet-for-Life. It’s Never Too Late to go back on diet.
Request a free copy of this helpful booklet “Your Guide to Getting Back on the PKU diet” and help yourself or someone you love get re-started on the PKU diet today!
This book contains:
Facts and Myths about the PKU and the diet
Tips for making formula part of your life again
Top 10 Nutricia PKU formulas for adults
Contact information to find a clinic and get re-started on diet
Inspiring quotes for PKU adults and more…
What is PKU?
PKU is short for Phenyketonuria. PKU is a genetic disorder that a child inherits from both parents. For a child to be born with PKU both parents must either be carriers of PKU or have PKU, which means they carry at least one PKU gene.
PKU occurs due to a deficiency or absence of the enzyme phenylalanine hydroxylase (PAH), which interferes with a person’s ability to metabolize or process the amino acid phenylalanine (PHE) into tyrosine, another amino acid. Amino acids, like PHE, are the building blocks of protein found in food and the human body. Consuming too much PHE from food can lead to a toxic build-up of PHE in the blood and brain of a person with PKU. Without treatment, this buildup of PHE will cause irreversible brain damage.
Presently, there is no cure for PKU, but it can be managed effectively with proper diet and special nutritional formulas designed for persons with PKU. View products.
In order for an individual to have PKU, both parents must pass along their PKU gene to their child. When both parents are carriers of PKU, there is 1 in 4 chance with each pregnancy that the child will have PKU, 1 in 2 chance of the child being a carrier, and 1 in 4 chance that the child will neither have PKU nor be a carrier.
It is estimated that one out of 10,000 live births has decreased PAH activity(1). Autosomal Recessive Inheritance Normal Gene Carrier Non Carrier Carrier Carrier PKU Carrier PKU Gene Phenylketonuria (PKU) *Phenotype- observable traits, outward appearances, development or behavior.
Newborn Screening for PKU
Newborn screening for PKU began in the US and Canada in the 1960s. It is important that an infant is diagnosed and managed with diet within days after birth to prevent permanent negative effects from PKU.
Nutricia is proud to offer the largest variety of great tasting formula options for people with PKU.
Learn more online at MedicalFood.com or contact us at (800) 605-0410 for free product samples.
Your metabolic dietitian will help you decide which products are right for you. PKU formula must be used under medical supervision.
1. Vockley J, Andersson HC, Antshel KM, et al. Phenylalanine hydroxylase deficiency: diagnosis and management guideline. Genet Med. 2014;16(2):188-200.
My child would eat pasta every day, every meal if I let him. It is great he found a food he enjoys, but I want my son to eat more vegetables and other healthy foods that provide fiber and other nutrients.
Here are some ideas to feed your child’s low protein pasta cravings, but to make your low protein pasta last longer and provide more dietary variety.
Dicing carrots and celery (the smaller the better for young kids) and simmering in a vegetable broth with low protein pasta added is a low pro and filling lunch or dinner. You can use Loprofin Animal Pasta, Rice, or broken Spaghetti to keep it new and exciting. Fresh dill adds a great ‘soup’ flavor and expand your child’s taste palate.
Bulk up your Low Protein Spaghetti by mixing with Zucchini or Yellow Squash noodles. With a spiral vegetable slicer this only takes minutes and can really satisfy a bigger appetite.
Spicy Vegetables over Low Pro Rice Pasta
You can do so many different meals with fresh or frozen cauliflower and carrots, which are both naturally quite low in protein. Often, people on a low protein diet enjoy spice. Check out this recipe for Indian Curry with Loprofin Rice.
Dish it out slow
I often serve my son a small amount of pasta, which he gobbles up. Then ask him to eat 3-4 bites of the vegetables on his plate. Once done I serve another small portion of pasta and repeat. All children are motivated differently, but that love of pasta usually is an incentive to eat more veggies at meal time.
Roll it up
Kids love to eat with their hands (or at least my son does). Use Loprofin Lasagna to make a salad roll-up or other roll-up filled with veggies. Try filling a pasta roll-up with a blend of mashed potato and mashed cauliflower for a yummy kid friendly dinner entree.
Order Loprofin Low Protein Pasta online at medicalfood.com
Written by Sandy Simons, MA, RD, CHES