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Teen & Adult PKU “Diet-for-Life” Conference

Teen & Adult

 November 11-13, 2016  –    Harrisburg, PA

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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!   

 

AGENDA

 

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 DietDr. Mitzi Grant, University of Pittsburg
  • The Simplified PKU Diet Kayt Marra, MA, RD, CDM, CCRP, University of Albany
  • Communication and Personal AdvocacySharon Ernst, MPH, RD, CSP, FAND, Linda Leuffgan, RD & Rachel Flar, Reimbursement Specialist

LUNCH BREAK

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!

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Don’t Wait:  BOOK YOUR ROOM

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We have a room block for just $95.95 per night!

ENTER GROUP CODE:  PKU1116   The special discount rate is available until Oct. 7th.  

Hotel includes:

  • Free Airport Shuttle
  • Refrigerator in each room
  • Large in-door pool
  • Restaurant on premise
  • Close to Hersheypark

Questions?   Contact Sandy.Simons@nutricia.com

College & PKU: Getting Ready for the Next Chapter

PKU-Teen College Image
The completion of high school and the transition into the next chapter of education is a very exciting time. Applying to colleges, receiving the ‘fat envelope’, choosing classes, moving away from home, and living with a roommate for the first time, are all new and exciting experiences.

Arriving on campus and the first few weeks on campus will be exciting and full of change.  You will meet a variety of new people and have many new experiences.  The one thing that remains constant is adhering to your low protein diet and drinking your PKU formula daily.  Keeping your PHE levels in control when you don’t have your family watching over you may be more difficult than anticipated, but at the same time, more important than ever.

The key is to FOCUS and make a PLAN!  Commit yourself to your PKU diet.  Long lectures, late nights studying and preparing for exams will require you to be at your best and drinking your PKU formula daily, spread throughout the day will be one of your tickets to success.  As you know, elevated blood PHE levels are linked to reduced executive function skills such as memory, recall and concentration.

Write out your daily schedule and include dedicated time to mix and drink your PKU formula.  This will help make formula part of your day and reduce accidental skips.

Tips for Drinking PKU Formula on Campus

  • Add formula powder to an empty water bottle (or other reusable container) that you can fill with water later for formula anywhere, anytime.
  • Is your dorm far from campus? Rent a locker at the school gym or student union to keep your formula so you can refuel in between classes and don’t have to go all the way back to your room.
  • Choose a formula that is sold in single-serving, travel  friendly packaging.  Powders in little pouches can easily be added to store-bought beverages while on campus or out with friends.

Examples include:

Periflex® LQ  is a ready-to-drink formula that provides 15g PE in a highly portable and easy-to-drink container for long days on campus.Back-to-School with Periflex LQ - TEENS

 

 

 

PKU Lophlex® LQ is a ready-to-drink formula that provides 20g PE in only 4.2 fl oz.  Quick and easy to drink down and get back to the book.

PKU_Lophex_LQ_Group_2016

 

 

PhenylAde 60™  is a low volume formula that mixes with only 3 fl oz of water for 10g of PE or any protein-free beverage you enjoy.

Great for Adults & Teens. Try it Today!

Check out these simple on campus mixing ideas:

PhenylAde™ MTE Amino Acid Blend is a unique formula that mixes with anyPhenylAde MTE Amino Acid Blend for PKU protein-free beverage you enjoy, such as lemonade, sports drink or fruit punch.

 

 

Talk with your metabolic dietitian or clinic to find out which PKU formula from Nutricia may be right for you.

To learn more or REQUEST A FREE SAMPLE of a Campus Friendly PKU Formula visit MedicalFood.com today!

Thank you NPKUA!

Thank You to the National PKU Alliance for hosting a wonderful PKU conference in Indianapolis, IN on July 28-31 ,2016.Team at Booth (2)

Nutricia Metabolics was proud to be a GOLD sponsor for this event that brought together over 600 people from Family from Canadaacross 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.

Postcard Booth with Linda and Mallory

 

 

 

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.

PhenylAde GMP

Available mid-November 2016!

 

 

Low Protein Summer Salads

Beat the heat and satisfy your appetite with a cool summer salad!

Summer is the perfect time to enjoy fruits and vegetables at the peak of freshness; making these low protein sala ds pop with flavor.  A make-your- own salad station makes a great addition to any cookout or pool party. You can also spice up a green garden salad by bringing along your favorite toppings and low protein dressing.

Try these themed salads for a fresh take on the usual bed of greens:

Fajita Salad: Create a colorful nutrient-packed meal by topping your salad greens with sautéed red and green bell peppers, onions and zucchini.

Mushroom Salad: Portobello mushrooms sautéed in fresh garlic or grilled can turn an ordinary salad into a savory meal.

Fruit Salad: Add diced apple, dried cranberries, diced peaches and grapes over greens. Toss with a light vinaigrette dressing for a sweet and tangy summer treat.

Mexican Salad: Spice up your salad with finely diced black olives, onions, cucumbers and tomatoes. Add jalapeños and salsa for an extra kick.

Roasted Vegetable Stacker: Toss coarsely chopped zucchini, eggplant, red pepper and onion in garlic oil and roast until tender. Serve piled high over a bed of salad greens.

Ratatouille Salad: Stew diced eggplant, olives, zucchini, garlic and onion in a broth made of tomato puree mixed with water. Allow to cool. This tasty topping can be served over greens or chilled low protein pasta to create a unique summer salad.

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Turn Your Salad into a Serving of PKU Formula

Just Mix It In!

Create Your Own PKU Formula with PhenylAde MTE Amino Acid Blend

Create Your Own PKU Formula with PhenylAde MTE Amino Acid Blend

Turn your summer salad creation into a phenylalanine-free protein boost. Just mix 1 scoop or pouch (12.8g) of PhenylAde MTE Amino Acid Blend (PKU formula) into 2 Tbsp of salad dressing for 10g of Protein Equivalents with No PHE!  Note: Be sure to eat the entire serving.

BIG WIN FOR MEDICAL FOOD COVERAGE

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.

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Get Creative with PhenylAde™ 60

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.

ICED COFFEE

ICED TEA

ORANGE DRINK

REQUEST A SAMPLE NOW

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!

 

 

 

 

Celebrate PKU Awareness Month with a Toast to PK-YOU!

POST & TAG your photo to be entered to WIN A FREE low protein food gift box from NUTRICIA METABOLICS!  

There will be 5 lucky winners!  See contest rules.

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To show support for PKU: Post and Tag your photo raising a glass with the hastags:

 #Toast2PKU and #NutriciaMetabolics

 

Contest Rules: No purchase necessary to enter. Entrants must be 18 years or older and reside in the United States. Limit 1 entry per person. A total of five low protein gift boxes (valued at approximately $50) will be awarded to five randomly chosen “Support PKU Awareness Month with a Toast 2 PK-You” participants (limit one gift box per participant). No one from Nutricia North America or anyone related to a Nutricia North America employee is eligible for participation in this sweepstakes. All entries become the property of Nutricia North America to be used at their sole discretion. All entries must be posted on Facebook or Instagram with the hashtag “Toast2PKU” and “NutriciaMetabolics” between 5/9/16 and 5/31/16 to be entered into the gift box drawing. The five winners will be selected by Nutricia North America by 5/31/2016 and will be notified by Nutricia North America on or before 6/12/2016. Facebook and Instagram are in no way affiliated with Nutricia North America and have not endorsed this contest or Nutricia products.

How do you manage PKU?

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 vegetabiStock_000015639017Mediumles, 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 Adult Imagethese reasons, it is important that persons with PKU stay on the low-PHE diet for life1,2.

 

REQUEST Book CoverA RETURN TO DIET GUIDE BOOK NOW

Tips for Making PKU Formula part of your life (1)

 

 

Know Your PKU Facts

 

 

 

 

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.

References:

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.

  1. Thompson AJ, Smith T, Brenton D et al.: Neurological deterioration in young adults with phenylketonuria. Lancet 1990; 336:602-605

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Your Guide to Getting Back on the PKU Diet

PKU is Diet-for-Life.  It’s Never Too Late to go back on diet.  

   Book Cover

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…

PKU Q&A
Tips for Making PKU Formula part of your life (1)

 

Top 10 PKU Formulas for Adults

REQUEST YOUR COPY

What is PKU?

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.

Incidence of PKUAutosomalRecessiveInheritance

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 provides a range of PKU formulas and low protein foods.  Learn more online at www.MedicalFood.com or contact us at (800) 605-0410 for free product samples.

Maternal-PKUfamily

Your dietitian will help you decide which products are best.

Nutricia is a proud supporter of PKU Awareness Month and the National PKU Alliance

Nutricia is a proud supporter of PKU Awareness Month and the National PKU Alliance

References
1. Vockley J, Andersson HC, Antshel KM, et al. Phenylalanine hydroxylase deficiency: diagnosis and management guideline. Genet Med. 2014;16(2):188-200.