We are absolutely thrilled to announce that our wonderful patron, and son of our iconic PMP angel Audrey Hepburn, has been invited by EURORDIS to continue his Rare Disease Day Ambassador role into 2015.
Having been appointed as Rare Disease Day Ambassador 2014 following my nomination, Sean had the following to say:
On January 20, 1993, my mother, Audrey Hepburn, passed away from a rare type of cancer – pseudomyxoma adenocarcinoma. When we found out that the only tentative treatment was a chemotherapy (5 fu leucovorin) available since the 60s, we, her family, truly connected with the fact that this disease was not a priority for Big Pharma. The most precious person we knew could not be saved.
So, when Dawn Green, CEO and founder of the ‘Pseudomyxoma Survivor’ Charity and herself a one in a million cancer survivor, nominated me to be the ambassador for Rare Disease Day 2014, I knew that, not only did she have this rare cancer but also a rare ability to transform darkness into light and smile in the face of adversity.
‘Rare’ is a word most often used to convey the same values as ‘precious’… unique… valuable. And if one adds up all of us precious beings that suffer from a ‘rare’ disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, I feel it is quite easy for any of us to relate to ‘rarity’… that rarity that comes in those moments when we must truly face life and adversity by ourselves.
When my mother visited Africa for UNICEF she would often say; “we cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…” It is in this spirit that I accepted this invitation.
The gift of Audrey Hepburn to the silver screen… to style and, ultimately, to humanitarian work was ‘one in a million’… and so was the disease that took her from us.
I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with.
Sean Hepburn Ferrer