Category Archive

Following the success of our Traces of PKU campaign, organised to mark th is year’s International PKU Day, we launched Traces of PKU Encore for World Mental Health Day. Through our social media channels, the campaign raised awareness of late-diagnosed PKU and its impact on the mental health of people with PKU, their siblings and their parents. At the heart of the campaign was a family story shared by Manuela Stecher. Her older sister, Ilona, was born before newborn screening for PKU was introduced in Germany and was diagnosed late. By the time Manuela was born, screening had been implemented, …

It is with great sadness that we have been informed of the death of Bill Macnab. Bill Macnab was one of those ‘hidden heroes’ who rarely take centre stage,  yet whose life’s work has a profound impact on the daily lives of many people living with PKU and allied metabolic disorders. Both during his time at SHS International (now Nutricia Metabolics) and later as the founder of Vitaflo, he devoted his energy and passion to people with rare inborn errors of metabolism. His pioneering spirit and dedication helped transform medical nutritional requirements into more palatable solutions suitable for everyday use. He …

As part of our Traces of PKU campaign organised on the ocassion of InternationalPKUDay, Gavin shared his experience of living with PKU and receiving a diagnosis of another health condition — a pituitary adenoma. We now share his story in full. Living With an Invisible Weight: My Mental Health Journey with PKU and a Hidden Hormonal Disorder Some stories take years to understand, and even longer to tell. Last year, when I was asked at ESPKU to share an anecdote about what living with PKU feels like, my mind went blank. I couldn’t find the words in that moment. Only …

International PKU Day, celebrated every year on June 28th, serves as a powerful catalyst for raising global awareness about life with Phenylketonuria. Each year, the European Society for Phenylketonuria and Allied Disorders (ESPKU) focuses on a specific facet of the PKU experience. Throughout the month of June, we dedicate our efforts to shedding light on a chosen aspect of PKU, helping the world understand the daily realities, triumphs, and hurdles faced by patients and our community. Living with a rare or chronic condition inevitably leaves a trace on a person’s mental well-being, and PKU is no exception. This year, we …

In MemoriamProfessor Louis Isaac Woolf, BSc, PhD, University College London 24 April 1919 – 7 February 2021 Professor Louis Isaac Woolf died aged 101 on 7 February 2021 in Vancouver, Canada, from a heart condition.  He is best known for developing his dietary treatment concept for phenylketonuria, PKU, based on a phenylalanine-depleted acid-treated milk protein.  In the late 1940s, when he was a biochemistry Research Fellow at Great Ormond Street Hospital, GOSH, in London, he had been pondering on possible treatments for the ‘untreatable, incurable’ PKU children seen there.  In what could now be considered translational research, a bridge between …

ESPKU is in charge of coordinating the European Parliament Cross-Party Alliance on PKU , which was launched in March 2020 . What is the European Parliament Cross-Part Alliance in PKU? Cross-Party Alliances, more commonly known as Interest Groups, bring together MEPs interested in a specific issue that they would like to actively champion. In other words, these Alliances function as internal advocacy/pressure groups within the European Parliament. A wide variety of such groups is in existence, some more active than others; their influence can be sizeable as they can make use of various tools to put pressure – on the …