PKU Awareness Day

posted by Elvin Willgrass, June 24 2021


International PKU Awareness Day: New labelling initiative making food buying safe for people with PKU

Freedom Confectionery launch PKU friendly stamp of approval after research reveals over half (55%) of protein product labelling by supermarket food brands is misleading or inaccurate

Monday 28th June is International Phenylketonuria (PKU) Awareness Day, a day when the PKU community and its supporters come together to help raise awareness of this rare disease.

As an avid supporter of the PKU community, Free-From confectionery brand Freedom Confectionery, is keen to highlight what retailers should be doing to support those who are living with this disease and the everyday challenges it presents.

The brand firmly believes that more still needs to be done when it comes to Free-From food labelling to ensure consumers feel safe and confident in their purchase. They believe food brands need to start paying attention and considering those with conditions such as PKU and food allergies. Natasha’s Law finally goes live in October this year and highlights the importance of labelling, as often the ingredients listed are in correct or misleading.

According to research led by Professor Anita MacDonald, Metabolic Dietician at Birmingham Children’s Hospital, over half (55%) of online protein product descriptions by supermarket food brands is misleading or inaccurate, making it potentially dangerous and incredibly challenging for customers with PKU to shop with confidence.

PKU is a rare condition that affects 1 in 10,000 babies born in the UK. It’s caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine (protein) and those with the condition need to follow a strict low-protein diet for life.

As a brand which understands the need for consumers to feel safe and confident with their food choices, Freedom Confectionery, Europe’s first manufacturer of gelatine free marshmallows is launching a PKU friendly stamp which will be introduced on its allergy free mallow packaging.

The packaging, which will be rolled out later this year, has been designed to promote inclusion and to ensure that no child feels left out due to their dietary needs.

The Lancashire based confectionery brand, which is the only brand in the world to produce 14 allergy free marshmallows, has partnered with the research lead, Professor Anita MacDonald, and the NSPKU, a UK charity set up to improve the lives of people living with PKU, to produce a standardised PKU approved authentication stamp to help make the shopping experience for people and parents who have children with PKU less stressful. And they are encouraging other brands to do the same.

The Freedom Confectionery packaging will also include PKU protein conversions within its nutritional information, making it easier for parents to determine whether the product is safe for their children.

Elvin Willgrass, sales director at Freedom Confectionery said: “We’ve worked with Prof. MacDonald and the PKU community for many years now and we’ve seen the joy marshmallows bring to children struggling with this condition day in, day out. We’ve also witnessed the challenges parents face when going to the supermarket. These families already have enough worry in their lives and should be able to rely on brands to provide them with the correct nutritional information. For many parents who have children with PKU shopping for food can literally be a life-or-death experience.

“The introduction of the PKU friendly stamp and the PKU protein conversion information is the first step in our mission to make food buying safe and easy for everyone, regardless of dietary needs. The fact that over half of supermarket food brands label incorrectly worries me on website as there are thousands of people in the UK who rely on packaging to give them the right information and to reassure them that what they are buying is safe for them to eat. Natasha’s Law launches in October this year, which will help drive a change, but we also feel incredibly passionate about it and want do what we can to make the shopping process easier for those who already have enough stress in their lives.”

The research, which was published in the academic journal, Nutrient, at the end of last year, revealed that “interpreting the protein content for some common supermarket foods available via online websites is inadequate, unclear and even misleading for people with PKU.” It also stated that “food regulations, manufacturers, and online food business operators have not considered the impact of any inaccurate product information for people on very low-protein diets.”

For those living with PKU, eating even just a small amount of extra protein can have serious health implications, so knowing how much protein is in the food they are buying, and eating, is paramount.

Prof. Anita MacDonald works with a number of children and families with PKU at Birmingham’s Children’s Hospital and stresses the importance of correct labelling. She said: “For parents or people with PKU walking into the supermarket is like navigating a minefield. Everything they choose for their children to eat must be checked and checked again to ensure it doesn’t contain high levels of protein, so incorrect labelling can have serious consequences for their children’s health. What Freedom Confectionery is doing is making it so much easier for these parents to shop, it will make a huge difference and I hope other brands will follow suit.

“Freedom Confectionery is also helping to bring some normality to the lives of these children, who can’t eat what their friends eat. Their faces light up when they are given a bag of marshmallows and for the children it’s a sweet treat they can enjoy and know is safe for them to eat. Inclusion is a big thing for children with PKU and the bright, colourful packaging produced by Freedom Confectionery helps make them feel included.”

Suzanne Ford, Society Dietitian for the National Society for Phenylketonuria is also backing Freedom Confectionery’s move to PKU friendly labelling. She said: “Often parents who have children with PKU are already stressed and going shopping can be a nightmare, especially as the children get older and want to choose what they eat for themselves. Having a stamp on the front of the packaging which says “this is safe for my child to eat” will make the extremely challenging shopping experience a little less stressful. I hope what Freedom Confectionery is doing inspires other food brands to do the same. PKU is a rare condition, with low awareness in the UK and I’m hoping that what Freedom Confectionery are doing also helps to raise awareness and highlights the struggles these families encounter every day.”

Jessica Brown is mum to six-year-old Stanley who was born with PKU and must follow a strict low protein diet for the rest of his life. For working mum, Jessica, shopping and researching online is a time consuming and challenging exercise. She can spend hours and hours every week online trying to find safe food for her son to eat.

She said: “It’s really time consuming, I can spend hours looking online for food for Stanley to try. As he’s getting older, he wants to try new things, food that his friends are eating, so I spend a lot of time researching what new foods are out there. When it comes to packaging, I check, check and check again and feel like I spend my life looking at labels. I can spend days going from one supermarket to another to find food for Stanley to try but it’s important that I give him the opportunity to try new things.

“The biggest challenge I find when shopping is the inconsistency in product information. Many a time, I have found a new product online that is fine for Stanley to eat and then when it arrives the protein information on the label doesn’t match what it says on the website and he can’t have it.”

And it’s not just the PKU parents that experience these challenges. Parents who have children with severe food allergies will also benefit from the new labelling, as well adults and young people who must follow low protein diets, including kidney disease.

Allergy and nutrition expert, Nathalie Newman, is one mum who knows how challenging allergy free food shopping can be. Her young son has 28 allergies and follows an incredibly strict diet. She said: “In the beginning it takes hours of research to find safe food to feed your child and for any parent in a similar position to me you have to trust the brands you’re buying from. It takes a long time to build that confidence and inaccuracies on labelling, especially online, could end up being fatal in my son’s case.

“Not only does a stamp of approval, like what Freedom Confectionery are working on, put the parent at ease but it also helps empower the children. It says to them, yes, I know this is safe for me to eat. It’s so important for brands to be open and honest on their labelling and many don’t understand the repercussions when items are labelled incorrectly. We just want our children to be safe and Freedom Confectionery understand that. They are able to back up everything they say and that’s why I trust them.”

For more information on Freedom Confectionery visit:


For any media enquiries or further information, please contact Freedom Confectionery’s national PR agency: Claire Lomax ( 0113 273 7816.

Notes to Editors

Freedom Confectionery was established in 2013 as the first European gelatine-free producer of marshmallows commercially worldwide, making them suitable for vegan, vegetarian, and Free-From consumers and completely natural.

The Freedom Confectionery management team are pioneers and innovators in the allergen-free world and have been active in the Free-From market since 2008. Current owners and managers were the previous majority owners of F T F Sweets Ltd that traded as Goody Good Stuff. Goody Good Stuff was the World’s First Gelatine-Free Gummy Sweet.

The brand specialises in the provision of vegan and allergen-free mallows, protecting people with allergies and providing full ingredients labelling on all its pre-packaged products to ensure people are confident with what they are eating when buying Freedom Confectionery products.

The business believes in delivering 100% allergy-free products and every marshmallow they produce goes through a rigorous testing process in the lab to ensure it meets the brand’s strict criteria for sale.

Freedom Confectionery has also recently been listed as one of the leading players of the Vegan Confectionery Market by The Insight Partners in its report entitled “Global Vegan Confectionery Market – Forecast to 2027 – Covid-19 Impact and Global Analysis.”


pku / Vegan / Vegetarian


Hello Mallowers. Would you like to keep in the loop with the latest Freedom Confectionery news; product launches; store listings; recipes; exclusive offers and much more…

You can unsubscribe effortlessly at any time from the e-mail itself. We will not share your email address with anyone else.