Today I was supposed to have been at the European Parliament to present them a factual and scientific White Paper detailing the issues surrounding ALS. But the disease decided to keep me in hospital for 10 days (nothing serious, I assure you).
I had the honor of representing the patient voice alongside brilliant scientists from all over Europe.
Here's a video of my speech to the MEPs (pre-recorded).
The White Paper is available below for download
Disclaimer: the preparation of this document was sponsored by the Amylyx laboratory.
Honourable Members, Ladies and Gentlemen,
It is a true honor to stand here today at the European Parliament to present our policy paper on ALS.
My name is Olivier Goy, and I am vice-chairman of the European working group that produced this document.
I am not a Frenchman speaking with a perfect English accent, but an ALS patient speaking with a synthesized voice.
Indeed, as the policy paper makes clear, the disease promptly imprisons us in our own bodies, though it leaves our intellect intact.
You will also learn that action is urgently needed. Both the disease and research are developing much faster than the administration.
Precious months are being lost, both at the national and European level.
This factual, scientific document should serve as your reference for understanding this major health emergency. And you, the politicians, have the power to change the course of history. To speed it up!
If I agreed to join this group of brilliant scientists, it's because their battle echoes the fight I have been waging for almost 3 years.
To raise awareness of ALS. Fund research. Those are my goals!
And the first results are in.
President Macron has agreed to a face-to-face meeting. Refund conditions for wheelchairs have already improved in France. But that is just one of the hundreds of hurdles we have yet to tackle.
With the help of filmmaker Stéphanie Pillonca, we released a documentary, INVINCIBLE ÉTÉ, in French cinemas over a 9-week period. It raises awareness among the general public of this disease, which is still poorly understood despite its destructive power.
1.5 million euros were raised for ALS and the Paris Brain Institute as a result.
As my personal battles will take on international ambitions this September, please allow me to conclude by presenting INVINCIBLE ÉTÉ’s trailer with English subtitles.
And remember, distinguished members, we are counting on you. And we must to act now,
Thank you very much for your attention!