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Push-Ups 4 PKU Challenge – Results

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 Thank you so much to everyone who participated in the #NutriciaMetabolics #Pushups4PKU challenge, which ended on National PKU Awareness Day, December 3rd, 2016.

 Nutricia North America is proud to have been a part of a movement to help raise awareness of PKU and raise funds to support NPKUA and CanPKU.

The outpouring of support from the community has been amazing! There are so many wonderful videos from families, school classes, sports teams, colleagues, fitness classes, kindergarten classes, metabolic clinics, healthcare professionals and friends that have truly touched us. We thank everyone who took part and shared their dedication and support for those affected by PKU.

We are proud to announce that we exceeded our initial goal and cap of 600 push-up participants from all over the world.    We’ve had:

  • over 100 videos shared on Instagram

  • over 300 videos posted on Facebook

  • over 100 videos posted directly onto our Facebook page

  • over 10,000 reach of likes, shares and comments

We couldn’t have done without your support.

We are pleased to be able to donate this shared amount of $3,000  in total to NPKUA and CanPKU.

Thank you to all for your push-ups in support of PKU.

Happy holidays!

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If you would like to make a donation to either NPKUA or CanPKU, simply click the logos below:

NPKUA LOGO

CanPKU

JAM SANDWICH – A Book for Teens with PKU

JAM SANDWICHES – THE BOOK


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Patricia Lorente is a mother of a child with PKU and a writer from Spain. She has written and published Jam Sandwiches with the help of Nutricia Laboratories in Spain to help raise awareness of PKU and create a dialogue around this rare metabolic disorder.

Books cost 7 euros and one euro from each book will be donated to The PKU Association of Madrid, ASFEMA. The book, originally written in Spanish, has been translated into English.

For more information and to order a copy please visit:

https://jamsandwiches2015.wordpress.com/

Push-Ups for PKU Challenge

push-ups-for-pku-artworkNutricia 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!

Be counted! 

To have your push-up video counted for a donation* be sure to post with both hashtags:

#NutriciaMetabolics and 

#PushUps4PKU

You can also post it directly to Nutricia’s  Facebook or Instagram accounts.

 

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:

 DONATE NOW

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CanPKU

 

 

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.

Tips for a Low Pro Friendly Thanksgiving

fb-thanksgivingThe holidays can be a tough time for many people, especially those on a restricted diet. The most important thing about managing PKU, any other inborn error of metabolism or a low protein diet during any holiday season is to plan ahead.  The more you know in advance, the better you can plan.

These are some questions to ask:

  • Where will I be spending the holidays and how long will the trip be?

  • Do I have enough formula so I do not run out over the weekend?

  • Am I dining at home or at someone else’s home?

  • Will I be making the menu or someone else?

Once you know more about what your day/weekend will consist of, you can make a plan.

One key thing to plan in advance is the menu.  If you are not dining at home, but at a friend’s or relative’s home, it will be important to ask what is being served, then…

  • Ask if you can bring a side dish (one that is low protein for you, but enough for everyone to share).

  • Let them know about your dietary needs so they can omit or serve items on the side that are not low protein friendly, like cheese or bread crumbs.

  • See if you can access the kitchen to re-heat or make additional items for the holiday meal.

 

Get Creative!

Many traditional holiday favorites can be modified to reduce the protein, while still keeping the taste and texture you and others love. Here are some recipes with small changes to lower the protein content — they are sure to become family staples at your holiday meals:

Reduced Protein Mashed Potatoes

2 cups (248 g), Cauliflower, florets
2 cups (312 g), White potato, peeled and cut into pieces
1 cup (156 g), Parsnips, peeled and cut into pieces
¼ cup (56 g),Non-dairy creamer, liquid
2 tablespoons (28 g),Margarine, dairy-free
To taste (2-3 g), Salt and pepper

Directions

  1. Boil potato and parsnip in a large pot until they begin to soften.
  2. Add cauliflower and continue to cook until soft and tender.
  3. Drain water.
  4. Place all ingredients in a food processor and blend until smooth.
  5. Salt and pepper to taste.

Makes 7 servings  (115 g per serving)

Protein 2 g     P HE 67 mg        Calories 105

End your holiday meal on a sweet note with this  low protein apple cobbler for dessert.  This is a dish everyone at your holiday gathering is sure to enjoy!

Low Protein Apple Cobbler

8 cups (880 g), Apples, peeled, cored, sliced
½ cup (110 g), Brown sugar, packed
1/3 cup (67 g), Sugar, granulated
¼ cup (28 g), Corn starch
2 tablespoons (31 g), Lemon juice
½ teaspoon (1.3 g), Cinnamon
½ teaspoon (1 g), Nutmeg
1 can (400 g), Maddy’s Homestyle Sugar Cookie Mix
8 tablespoons (1 stick), Margarine, dairy-free

DIRECTIONS

  1. In a large bowl, combine Maddy’s Homestyle Sugar Cookie Mix and margarine.
  2. Blend until mixture is fully combined (resembles coarse crumbles)
  3. Set aside
  4. In a second large bowl, combine all other ingredients.Stir.
  5. Place apple mixture into a greased 9 x 12 inch pan.
  6. Spoon cookie mixture over top of apples, evenly.
  7. Bake at 375° F for 35-45 minutes (until apples are tender and topping is lightly browned.)

Makes 12 servings  (124 g per serving)

Protein 0 g        PHE 8 mg         Calories 215

And most of all…

Holidays do not have to be all about food.  Make your holidays memorable with family traditions, such as a family football game or checkers tournament.

Happy Thanksgiving from

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

Teen & Adult

 November 11-13, 2016  –    Harrisburg, PA

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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!   

 

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, Drexel University
  • 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 NOW!

 

Budget Friendly:   The Econo Lodge Harrisburg/Hershey 

1006 Briarsdale Road, Harrisburg, PA, 17111 (about $64 – $75 per night)

Conference Venue:   The Central Hotel Harrisburg/Hershey 

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)

Questions?   Contact Sandy.Simons@nutricia.com

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!

 

 

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!

 

 

 

 

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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Copyright 2015 Nutricia North America, Ic.  All Rights Reserved.

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