About the foundation

Horizon Usher Foundation is an independent non-profit organization created in 2022 to support innovative research on Usher Syndrome and Retinitis Pigmentosa, with a special focus on mutations in the USH2A gene.

White sailboat on a calm ocean
About Us

Understanding the diseases

USHER SYNDROME

Rare inherited condition combining congenital hearing loss and progressive vision loss due to Retinitis Pigmentosa.

RETINITIS PIGMENTOSA

Group of genetic disorders that gradually destroy the photoreceptors in the retina, leading to tunnel vision and most of the time to blindness.
There is currently no cure.

What we stand for
1
Inform & Raise awareness

We believe that understanding is the first step to change.
Our goal is to shed light on Usher Syndrome and Retinitis Pigmentosa, and to keep the public informed about the latest medical breakthroughs.

Newsroom

2
Create & Collaborate

We design bold, inclusive initiatives by partnering with artists, brands, and institutions.
Each project is an opportunity to tell stories, break taboos, and create emotional connection.

Projects

3
Act & Support

We raise funds to accelerate research and drive innovation.
Our mission is to help science move forward, and bring hope of healing and restored vision to those affected.

Donate

“With our research teams, we are convinced that the call for donations, associated with strong media coverage of Horizon Usher Foundation through their various projects and the international reputation of the companies with which they collaborate, would be a great way to contribute together to the culmination of research projects on retinitis pigmentosa and to communicate on our recent advances that bring so much hope.”

SERGE PICAUD
Director of Institut de la Vision, Paris

Who we are

BENJAMIN DEMARQUILLY

Osteopath & International model
Founder & CEO of Horizon Usher Foundation
Living with Retinitis Pigmentosa

Horizon Usher Foundation was founded in 2022 to raise awareness, accelerate research, and inspire action for Usher Syndrome and Retinitis Pigmentosa. We believe that visibility and collective strength bring light to invisible challenges.

THE STORY

Benjamin, originally from Northern France with a background in osteopathy, was diagnosed with Retinitis Pigmentosa in 2019. A chance encounter at a music festival opened doors to international modeling, inspiring him to create the foundation.

Now based in Barcelona, Benjamin balances his modeling career with his dedication to advancing research and awareness for degenerative visual conditions.

The Team

Horizon is still a small team, for now. Close-knit and driven by a shared purpose, we’re like a family, passionate about growing the foundation, developing nice and powerful projects, supporting research, and connecting with those who need it most.
We’re always looking for new people to join us.
portrait of Benjamin Demarquilly sailing with sunglasses
Benjamin Demarquilly
Founder & CEO
portrait of Elvira Guardia on a wood sailboat
Elvira Guardia
Director of Creative & Strategic Development
Gérald Demarquilly
Finance Manager
portrait of Julie Demarquilly
Julie Demarquilly
Community Manager
portrait d'Arthur Aumoite et son chien guide
Arthur Aumoite
Spokesperson and Head of Support & Orientation
Previous
Next
We support

Institute for Neurosciences of Montpellier (INM)

At the end of each year, 50% of all donations are allocated to the INM, one of France’s leading research centers dedicated to retinal degenerative diseases.

Several expert teams are based at the INM, including those led by Prof. Vasiliki Kalatzis, Prof. Isabelle Meunier, and Béatrice Boquet. Their research is partly focused on the USH2A gene, which plays a major role in inherited retinal disorders such as Retinitis Pigmentosa and Usher Syndrome.

Check the Institute établissement of the Institute for Neurosciences of Montpellier

GENE USH2A

The USH2A gene plays a major role in both isolated Retinitis Pigmentosa and Usher Syndrome Type 2. Mutations in this gene can lead to very different sensory impacts : hearing loss, vision loss, or both; depending on how they manifest.
DNA chain
1
Isolated Retinitis Pigmentosa

Retinitis Pigmentosa is a genetic, degenerative eye disease that primarily affects the retina’s photoreceptor cells, causing their progressive breakdown. This leads to gradual loss of vision, often progressing to blindness.

Mutations in the USH2A gene can be responsible for non-syndromic RP, without associated hearing loss.
​
The prevalence is 1/4.000 people affecting both sexes and appearing most of the time between the ages of 10 and 30.

Learn more

+