Hi, I am Sanne

I was born and raised in Katwijk in the Netherlands, but have felt like Australia was my second home since my first visit in 2013/2014.

My parents started the DCAA Association in 2007 and I have been involved ever since. Because of my work as a patient advocate, I work closely together with the research teams in the Netherlands, Boston and Perth.

My mother is a DCAA genecarrier and I have 50% chance to carry the gene myself. Because of this, I know from up close what it’s like. In addition, I am a psychologist and know everything about the impact of the disease on people’s lives.

For these reasons, I decided to act as a liaison for people thinking about participating in TRACK DCAA. If you sign up through the website, I will be the first to contact you. This is either to answer your questions if you are not sure or to help you navigate what participation means when you decide to. And remember: there are no stupid questions.

I am happy you are here on the website and getting informed. Maybe it will give you hope: how amazing is it that we are working together towards a treatment for Dutchtype CAA? We really are stronger together.

With warm regards,
Sanne