February 28th is Rare Disease Day!
Rare Disease Day is the last day of February each year. Sometimes this falls on a Leap year. Just as Feb 29th is a rare day that happens only once every 4 years, many people live with a rare disease EVERY DAY of the year.
Learn more about Rare Disease Day and how to get involved at http://www.rarediseaseday.org/
Nutricia Metabolics is proud to help support those living with a rare metabolic condition. Learn more about these RARE Metabolic conditions and help raise awareness today and everyday!
To learn more about each of these Rare Metabolic Conditions – CLICK on the letters:
Homocystinuria is an inherited, genetic disorder. “Classic” homocystinuria occurs because of a deficiency of the enzyme cystathionine betasynthase (CBS). A deficiency in CBS interferes with the body’s ability to fully process an essential amino acid called methionine. If left untreated, this can cause serious health problems.
Isovaleric acidemia (IVA) is an inherited, genetic disorder. IVA occurs when there is a defect in an enzyme that helps break down protein from food. The name of the enzyme is isovaleryl-CoA dehydrogenase (IVD).
Glutaric Aciduria Type 1 (GA-1) is an inherited, genetic disorder. GA-1 occurs when there is a defect in an enzyme that helps break down protein from food. The name of the enzyme is glutaryl-CoA dehydrogenase (GCDH).
Propionic acidemia (PA) and methylmalonic acidemia (MMA) are inherited, genetic disorders. Both are caused by defects in enzymes that are needed to break down protein. In PA and MMA, four of the amino acids cannot be broken down but instead produce toxic acids in the body. These amino acids are methionine, isoleucine, threonine and valine, which are called “propiogenic amino acids.”
Maple Syrup Urine Disease, or MSUD, is an inherited, genetic disorder caused by a defect in three enzymes that help break down protein from food. The official name for MSUD is Branched- Chain Alpha-Ketoacid Dehydrogenase Deficiency, but it is called MSUD because the urine from untreated infants with this disorder can smell sweet like maple syrup.
Urea cycle disorders (UCDs) are a group of inherited, genetic disorders. The urea cycle is a chain of reactions using a group of enzymes in the liver. These enzymes are important in removing unneeded protein byproducts (nitrogen) from the blood.
Long-chain fatty acid oxidation disorders (LC-FAODs) are a group of inherited, genetic disorders. LC-FAODS occur when there is a defect in one or more enzymes that help break down fat from food for energy. LC-FAODs prevent the body from using fats normally.
For many, the new year marks a time for reflection and change. If you are thinking about trying a new PKU formula, here are some great options from Nutricia Metabolics.
Click the Product Image to Request a Sample
Looking for a GREAT tasting PKU formula that contains Glycomacropeptide (GMP), made from a whole protein source? You found it! Now in 2 great options.
10 g of PE | 5 fl oz | 15.3 mg PHE | 132 calories
When great taste and PKU nutrition meet,
you’ll find PhenylAde Essential. Choose from 5 delicious flavors. Available in cans or single serve pouches.
10 g of PE | 7 fl oz | 157 calories
If you are looking for flexible and convenient, this is the PKU formula for you! Available in 3 great flavors and made with real fruit juice from concentrate. You are sure to give this formula a ‘LIKE’ status.
20 g of PE | 4.2 fl oz | 120 calories
Ever wish for a PKU formula you could just open and drink? Wishes do come true with this ready-to-drink PKU formula. Best of all, it is easy to drink with a smooth and creamy taste.
15 g of PE | 8.5 fl oz | 160 calories
If you are looking to meet your total PKU formula needs with less-to-drink, then PhenylAde 60 is for you. Great for Adults & Teens!
10 g of PE | 3 fl oz | 49 calories
Yes, it’s true! There is a new addition to the PhenylAde® GMP line of PKU formula.
PhenylAde GMP Original Flavor is a mild and neutral tasting PKU formula that contains Glycomacropeptide (GMP), made from a whole protein source.
Why We Created This Product:
PhenylAde GMP Original Flavor was created based on feedback from you, the PKU community.
We heard in-person, online and from your clinics that you wanted a neutral tasting GMP-based product that was mild and easy-to-drink.
The PKU community spoke and Nutricia listened. We are proud to add this great tasting formula to our PKU product line.
Many people with PKU sampled this new GMP-based PKU formula at local or national events this summer. We wanted your input.
The feedback was fantastic! We truly hope everyone who is seeking a GMP-based PKU formula enjoys the mild, neutral taste of this new GMP-based formula for PKU.
PhenylAde GMP – Now Available in 2 Great Options!
Hear what a PKU adult had to say after sampling PhenylAde GMP Vanilla:
The holiday season is full of fun, friends and family time. It can also be challenging to those following a special diet, but with advance planning you can enjoy the festivities without overindulging.
Don’t forget your formula! Plan to have it between meals or drink before a meal to help prevent exceeding your prescribed diet.
Make a Plan. Check out your food options before filling your plate. Make sure not to go over your daily natural protein allowance.
Bring a dish. If you are going to have the holiday meal at a friend’s or relative’s home, bring a low protein friendly dish everyone can enjoy. This way you will be certain to have food you like, but also share with others.
Below are some suggestions and tips for creating a holiday menu that will help you to stay within your recommended protein intake.
Soups & Appetizers
Start with a variety of fresh raw vegetable crudités with a low protein dip or salsa.
Be sure soups are vegetable based and do not include hidden animal protein or dairy.
Oven roast a variety of vegetables tossed with olive oil and garlic or other low protein seasonings for a flavorful side dish that everyone can enjoy.
Serve steamed vegetables with sauce on the side. This will allow you to choose how much, if any sauce, to add.
Make some minor changes to some old favorites. Reduce the protein content of mashed potatoes by blending potato with parsnip, cauliflower, non-dairy creamer and dairy-free margarine for that real mashed potato taste with less total protein. View Recipe
Low protein stuffing is easily made by substituting cubed low protein bread as your main ingredient. Use vegetable broth and dairy-free margarine for moisture. Add celery, onions, diced apples and your favorite seasonings for a delicious combination.
Save Room for Dessert
There are many delicious desserts that can take center stage after the meal. Try the following:
Home-made holiday cookies. Cookies can be the focus of a family activity. Bake Maddy’s Homestyle Sugar Cookies in advance either as drop cookies or rolled and cut into holiday shapes.
Purchase a variety of low protein frosting and sprinkles (choose holiday shapes and colors) and let everyone take part in the decorating fun.
For a special dessert, check out our low protein Holiday Cake. This delicious dessert tastes as good as it looks and will be a treat everyone can enjoy. View Recipe Here
Happy Holidays from
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.
If you would like to make a donation to either NPKUA or CanPKU, simply click the logos below:
JAM SANDWICHES – THE BOOK
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:
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!