2024: Kate Leoroyd and Caroline Graham

Changing government healthcare policy requires determination and resilience. Kate Leoroyd and Caroline Graham from the United Kingdom National Society for Phenylketonuria (NSPKU) demonstrated this commitment over ten years in advocating for Sapropterin (BH4). This drug, despite being licensed in 2008, was not funded by the National Health Service (NHS). They worked to change this by understanding the NHS drug commissioning processes, highlighting the lack of "quality of life" considerations in assessments and gathering evidence through surveys. They mobilised NSPKU members, contacted politicians and formed an All Party Parliamentary Group to address the unmet needs of PKU patients. Their efforts led to BH4 finally being made available on the NHS for patients in England, Scotland and Northern Ireland. The NSPKU’s success has inspired other organisations and strengthened their role in advocacy.

2023: PKU Turkey Family Association (Turkey)

In February 2023, the Turkish PKU Community was shaken by an devastating earthquake. In this moment of greatest crisis, the PKU Turkey Family Association has added another heroic chapter to their history. Coordinated by their president Deniz Yilmaz Atakay, many volunteers packed food and amino acids, took off from their jobs and delivered the care parcels to PKU patients and their families in the earthquake areas. They crossed completely destroyed cities and illegal zones, and found people still living under the rubble. They followed the trail of newborn babies and helped transfer them to other cities. For months, they have experienced a huge psychological battle. Despite the traumatisation, they did not let their people down and continued to manage the crises.

2022: Oksana Paskhalna (Ukraine)

Being a mum to a daughter with PKU, Oksana has been the lead in the Ukrainian PKU Society since 2018. It was not the crisis that revealed her character, but the Russian invasion of her country tested her talents and skills. Being concerned about her and her families own safety, she became the most important go-between, a vital link in the information and supply chain of the Ukrainian PKU community, whether inside her homeland or abroad. Oksana spent energy and effort galvanising support and raising awareness of the needs of the families for, most importantly the PKU formulas they were running out of, but also low protein foods. She was and still is the life-line for the patients, maintaining contact with them and with humanitarian agencies and assisting with access to humanitarian aid.

2021: Manuela Stecher and her sister Ilona Benkel (posthum) (Germany)

Ilona Benkel has been diagnosed late, after her younger sister Manuela was born and diagnosed with the just recently implemented Newborn Screening. While taking care for her own health, Manuela has endured much personal pain with concerns about her severely handicapped sister Ilona. However, she helped her parents to overcome the resignation of not being able to do anything for her. Together with her family, she became a role model for others to share their experiences and giving Ilona’s fate a meaning. And Ilona, not being aware of it, contributed significantly to raising public awareness on the needs of late diagnosed and almost forgotten PKU patients. Their family story is central to a video documentary about late diagnosed PKU, that has been translated into several languages. As a board member of the German PKU Association, she championed newborn screening and late diagnosed patients and their families. On behalf of her sister, Manuela spoke to doctors and scientists at symposia, and she testified to both national and European policy makers.

2020: Mrs. Sanja Perić (Croatia)

For more than 30 years, Sanja Perić has been exceptionally passionate about PKU patient advocacy. As a researcher and mother of a daughter with PKU she soon realized that people living with a rare disease like PKU can only be successful in demanding their rights and achieving better care when they join their forces. As president of the Croatian PKU Society, she was a creative organiser of various events, also partnering with other PKU organizations from abroad. She wrote cookbooks and developed educational materials, generated public awareness of patients' needs and collaborated with various national and international institutions. With her selfless dedication, she has positively influenced the quality of life of many PKU patients in Croatia and beyond.

2019: Mrs. Sengül Kocatürk (Turkey)

Sengül Cocatürk has devoted her life to improving her sons quality of life. In 1978, there was no newborn screening in Turkey, which is why her son's PKU was not diagnosed until he was one year old. Sengül became a beacon of advocacy for the PKU community. She raised awareness and funds for PKU. She initiated the establishment of the first PKU organization in Turkey and co-authored a book about PKU and low protein recipies. She participated in international metabolic symposia and built a sustainable network for the patient community with physicians and scientists in Turkey and in Denmark and Australia, where she lived temporarily.

Laura Petreuș - Winner 2018

2018: Mrs. Laura Petreus (Romania)

Laura Petreus is the mother to three children. In 2003, The PKU diagnosis of her youngest son at the age of 7 weeks also led to his three-year-old brothers also being diagnosed with PKU. Just one year later, she started campaigning for adequate treatment of PKU in Romania. She didn't take a no for an answer and advocated for PKU patients to have access to protein supplements and for pediatricians to be trained in inborn errors of metabolism. She was faced with a lack of pediatric dietitians. In the following years, she researched scientific articles and low-protein recipes for other parents and for doctors. She wrote letters to politicians, met the Romanian Minister of Health and the Prime Minister. In television programs and interviews, she championed the maintenance and further development of newborn screening in her native country. In 2015, she was one of the three co-founders of the Romanian PKU association Aproteica.