Sheila Jones Award

A patient advocate award

E.S.PKU Conference 2024

Learn more about the upcoming E.S.PKU Conference

The Story of the "Sheila Jones Award"

The Sheila Jones Award was initiated by the E.S.PKU in 2017 - first awarded in 2018. As there are many awards for professionals and scientists but none for patient advocate E.S.PKU saw the need to initiate this.

The family of Sheila Jones and her families story are stonefly tight to PKU. If you haven't watched the video yet you should do so immediately to understand the importance of her story and this award.


What you need to know ...


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.