WHAT IS PKU?


Phenylketonuria or PKU is a rare genetic metabolic disorder that affects one in 15,000 births. That means only approximately 250 babies will be born with PKU each year. Those with PKU can't effectively break down the amino acid phenylalanine (phe) which is present in all foods containing protein. Excess phe builds up in the body and acts as a neurotoxin, attacking the patient's body and brain.

To stay healthy, most PKU patients follow a strictly protein-limited diet, which generally allows 4-8 grams of protein (roughly 200-400mg of phe) per day, and is supplemented by a medical formula that completes their nutrition. Compare this with a typical diet, in which a people eat 40-60 grams of protein per day. People with PKU cannot eat meat, dairy, fish, nuts, soy, or most bread products.

Managing the diet, and staying full, is difficult. Medical foods are available, but very expensive. Most patients manage with a combination of store-bought, homemade, and medical foods. They are always eager to find new foods they can safely eat. This is where the Partnership for PKU comes in.

WHAT WE NEED FROM YOU


  1. Unrounded protein numbers for your products. Wait, that's all? Well, if you've done the amino acid analysis and can give us phenylalanine content, we'll gladly take it, but otherwise, unrounded protein is fine (to two decimal points, e.g. 1.25grams per serving). If you'd like to provide funding for us to run your products through our amino acid testing progam, get in touch and we'd love to work with you.
  2. A dedicated contact person within your company.
  3. Product updates: We know recipes change, and we need you to keep in touch when they do. Our community is fiercely loyal to the products that work for our diet, and therefore we need to know when a recipe—and potentially the protein content—changes. We'll work with you to make this process as easy as possible.

With unrounded protein and the ingredient list, our dietetic team can estimate phenylalanine content and add appropriate foods to our database at HowMuchPhe.org.

Why can't we just use the protein value on the label? Here's why:

  • The amount of phe in a gram of protein ranges from 20-50mg, depending on the type of food.
  • A package label that reads "1g protein per serving" could have as little as .51g and as much as 1.49g protein
  • That means this serving could have as little as 10mg or as much as 74.5mg of protein. For someone limited to 200mg/day, this margin of error is equal to almost a third of their daily allowance. And when healthy brain functioning is at stake, there's no room for error.

DON'T HAVE THE UNROUNDED PROTEIN? SPONSOR YOUR PRODUCTS!


We're happy to obtain the unrounded protein for you, using the same process we use to derive our amino-acid-verified values. We work with two internationally-reknowned food analysis labs, using multiple samples and a control, to assess the unrounded protein in your sample, or, if you prefer, the full amino-acid panel. Costs for this range from $100 (unrounded protein) to $500 (amino acid panel) per SKU. Bulk discounts may apply and our analytic team can determine the best samples to test to save you time and money. Contact us for more information on this program.

WHAT WE CAN GIVE YOU


The PKU community is the very definition of a targeted market: Our needs are specific, we're in constant communication with each other online, and we're very loyal to those products that work for our diet. Joining the Partnership for PKU puts you on our side — and wins our loyalty.

When you become a member of the Partnership For PKU, National PKU News promotes your brands and products through:

  • HowMuchPhe.org, our online diet-management app with phe values for more than 7,000 foods.
  • Press Releases & Features on PartnershipForPKU.org
  • Social Media on our active Facebook community and Twitter feed
  • Exposure to the PKU and other metabolic communities throughout the U.S. and Canada

We'll feature your logo and link to your web site, work with you on press releases and other media opportunities, and assist you in leveraging the power of the PKU community to support your brand. You can also display the Partnership for PKU stamp of approval on your web site & marketing materials.

There are an estimated 15,000 people living in the U.S. with PKU, and their influcence is wide: Many products consumed by those with PKU are also good for other diets (i.e., gluten-free) and metabolic disorders. When this community finds something great, they share with anyone and everyone who might benefit, expanding your product's market visibility.

OUR PARTNERS


Logos and brand names featured on this site are the property of their respective trademark holders. These trademark holders are not affiliated with National PKU News or our website.
Their appearance on this site does not constitute an endorsement.

JOIN THE PARTNERSHIP

Fill out the form below. We'll gather a list of products and/or get in touch for your suggestions, and we can work from there.