About the foundation

Horizon Usher Foundation is a 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.

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

Information and understanding are the first steps toward change.
The goal is to shed light on Usher syndrome and retinitis pigmentosa, share the latest medical advances, and emphasize the importance of supporting research.

Newsroom

2
Create & Collaborate

We design inclusive initiatives with artists, brands, and institutions to tell stories that challenge norms, break taboos, and awaken awareness.

Projects

3
Act & Support

Through our initiatives, we raise funds to support and accelerate medical research.
Our mission : to advance science and bring the hope of a cure and of restored—or at least preserved—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 & President of Horizon Usher Foundation
Living with retinitis pigmentosa

Horizon Usher Foundation was created in 2022 to raise awareness, accelerate research, and inspire action around Usher syndrome and retinitis pigmentosa.

Commitment, hope, and collective mobilization are the foundation’s guiding principles.

THE STORY

Benjamin, originally from northern France and trained as an osteopath, was diagnosed with retinitis pigmentosa in 2019.
A chance encounter at a music festival opened the doors to an international modeling career, which later led him to create the foundation.

Now based in Barcelona, Benjamin divides his time between his modeling career and his commitment to advancing research and raising awareness of degenerative vision diseases.

The Team

United to develop meaningful and impactful projects, support research, and give a voice to those who need it most.
portrait of Benjamin Demarquilly sailing with sunglasses
Benjamin Demarquilly
Founder & President
portrait of Elvira Guardia on a wood sailboat
Elvira Guardia
Director of Creative & Strategic Development
Gérald Demarquilly selfie
Gérald Demarquilly
Finance Manager
Julie Demarquilly portrait, smiling to camera
Julie Demarquilly
Community Manager
portrait d'Arthur Aumoite et son chien guide
Arthur Aumoite
Spokesperson and Head of Support & Orientation
Federico Oddone
Scientific Research Liaison
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We support

Institute for Neurosciences of Montpellier (INM)

At the end of each year, the majority of donations is 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.
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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

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