Merel Hennink, wife and mother of 2, was diagnosed with stage IV NSCLC in November 2014. She started targeted therapy for her ROS1 fusion and is still, with great results, on her 2nd TKI since 2016. Until April 2020, she worked as a program manager and a teacher at the University of Applied Science Groningen. But as advocacy work became more structured, she decided to put her time and energy in the service of her family and advocacy fulltime.
In early 2015, Merel became very active in the Patient Advisory Board of Longkanker Nederland (Dutch patient organization), to be a face and a voice of lung cancer in the Netherlands. In 2018, she also became an ambassador of Lung Cancer Europe (LuCE, a European umbrella organization) and represents Longkanker Nederland in the Global Lung Cancer Coalition (GLCC). She has presented on diverse platforms and is active in diverse global patient councils.
To get more educated about her own driver mutation, she became active in the Global Initiative of the ROS1ders in 2015. In her own country, she started the foundation, Stichting Merels Wereld to raise (European) awareness about ROS1, and to get research done. As a result, her employer, the Hanze University started a research course ´Merels Wereld´ in 2017, and together with the University Hospital Groningen, they made a ROS1 research program. Every year she gives lectures to (medical) students about the engaged patient and the benefits of collaborating with them.