WHO ARE WE ?
My name is Benjamin,
I was born in Arras, in the North of France, I'm 31 years old,
now based in Barcelona, graduated in osteopathy and, since 2 years, international model.
In 2019, I was first diagnosed with Pigmentary Retinopathy.
2 years later, the doctors announced me it is linked to Usher Syndrome.
MY STORY
It was therefore in 2019, after a few ophthalmological examinations following difficulties in correcting the vision of one of my two eyes, that the doctors mentioned for the first time in my life this unknown term of "Retinitis Pigmentosa".
After a very complicated year psychologically, mentally, socially and emotionally, I met Clément at a music festival in Calvi (Corsica). We quickly develop a real friendship and a few months later, he decides to create his own modeling agency and offers me to be the first.
A few signatures and here I am represented by several European agencies, which in a short year literally transform my daily life.
I go from a very weakened state to a strong and determined being to enjoy every moment of life, every family moment, those between friends, every landscape, every color, every light.
This light, it may be a question that I no longer see it in a few years.
At least that's the final outcome I'm promised at the moment.
And if not ?
To try to reverse the prognosis, I decided to create my own foundation which I therefore called HORIZON.
This was the beginning of the story. Just after the creation of the foundation, I received the results of the genetic assessment which announced that the pigmentary retinopathy of which I am a carrier is due to the fact that I have Usher Syndrome, a syndrome which in 99% of cases gives a deaf child or almost as soon as the birth.
I'm one of the 1% with no hearing symptoms... How lucky!
But that said, I still carry a mutation defect on the USH2A gene, which means that I have a type 2 Usher.
With our internal team, we then decided to rename Horizon Foundation into Horizon Usher Foundation, with the aim of not only helping research into retinopathy pigmentosa but Usher Syndrome.
OUR TEAM
If I told you about my professional career, it's actually because the foundation was born after I had an idea for a project related to my new job.
I am lucky to be one of the few models today who parade for the Giorgio Armani brand. I was very happy to have this possibility but during my first fashion show, I found myself very dazzled by the spotlights of the "catwalk".
Of course, I didn't dare say anything to anyone but told myself that I couldn't continue to hide it from everyone since my daily life is a little more impacted every day...
So I decided to tell them about my disability but by offering them to support the HORIZON project which is to realize one of my dreams :
Crossing the Atlantic Ocean by sail.
Project they accepted.
Project we made.
We therefore took advantage of the size of their brand and their media coverage to sensitize as many people as possible and try to raise funds that will help medical research.
You can find out more about our traversie by clicking here.
