Meet Olivier Goy: entrepreneur and major donor

In December 2020, at the age of 46, Olivier Goy was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. It is a serious and debilitating neurodegenerative disease that leads to death within three to five years of diagnosis. Deciding to take full ownership of his fight and bring it into the spotlight, Olivier Goy joined the Circle of Friends of Paris Brain Institute as a major donor and became an ambassador for the Institute, with the aim of raising awareness of this disease and advancing research.

Why did you decide to speak out?

I decided to talk about this disease because it is still largely unknown. The reason why we hear little about it is simple: most people die from it within three to five years. We don’t know the causes of the disease and, worse still, we don’t yet know how to treat it.

Talking about it is also a way to open up the dialog. When I was given the diagnosis, it was a complete shock. Then, in March 2021, I decided to reveal my illness on Matthieu Stefani’s Génération Do It Yourself podcast, where I explained my desire to fight it and enjoy life to the fullest. After that podcast, I received thousands of stories from others. I realized that there were so many people around me who were suffering. I want to lift them up and show them the beauty of life.

This is the reason for the documentary I’m shooting with director Stéphanie Pillonca and 3e OEil Productions. The film Invincible été (Invincible Summer) – based on the Camus quote, “In the midst of winter, I found there was, within me, an invincible summer” – tells my story, but also the stories of three other people affected by disabilities who, despite everything, have decided to live their lives as fully as possible.

The profits from the film, which was released in theaters in early 2023, and from the sale of photos from the shoot, will go to Paris Brain Institute. This is one of the ongoing initiatives to raise funds for this Institute, which conducts ambitious research on ALS.

Why philanthropy?

Philanthropy is a breath of fresh air. It opens you up to others and helps you feel useful. That’s why, in 2019, my wife Virginie and I created the Photo4food Foundation, which is based at the Institut de France.

My commitment to Paris Brain Institute stems from my desire to support teams involved in research dedicated to ALS, whose work aims to identify treatments that will slow the rapid progression of this disease. I probably won’t benefit from the results of their work. But investing in research and its applications is nevertheless the only way to offer hope to future generations.