Parent and Patient Advocacy
InfoSarcomes France, France
I am happy to share the experiences which we gained as a family of 4 with my son’s illness and his way to cope with it and to get an insight into the scientific background of sarcoma research.
Since 2010, when my son was diagnosed, I am an active member of Info Sarcomes, the French association for sarcoma and GIST Patients. I was invited to join the parents committee of EpSSG in 2016 and joined the Foster consortium in 2022. I contribute to the MyKids study as patient referee.
In 2010, at the age of 13, my son had an undifferentiated sarcoma in the right collar bone. He was treated for 8 months in Nice with 6 cycles of chemotherapy, surgery after the third cycle and 6 weeks of radiotherapy after chemotherapy. The 5 years of remission were event free and he is doing well.
In 2020 he was PHD student in molecular biology, working at the Institute of Cancer Research in Sutton. Even he stepped back from a scientific career right now, he is still available for patient advocacy tasks, especially in the AYA sector.
My professional background is in Marketing and Computer Science. I work as Software engineer at IBM.
