The Foundation SSNEU | Síndrome d’Usher

At Foundation SSNEU | Síndrome d’Usher, we work to advance research and to find a cure and treatment for Retinitis Pigmentosa in Usher Syndrome type 1B. We dedicate all our effort and determination to give a future full of light to everyone with Usher Syndrome 1B.

Objectives

Committed to curing childhood blindness

Imagine, for a second, having to face the world without hearing any sound, without balance, and without sight.

Usher Syndrome Type 1B is a genetic disorder that deprives children of their hearing and balance from the moment they are born. Their eyesight also quickly deteriorates until they become completely blind. Usher Syndrome is the most common cause of deaf-blindness, causing 50% of cases around the world.

Save Sight Now Europe’s goal is to find a cure for Retinitis Pigmentosa, the cause of blindness related to Usher Syndrome. We strive to reach a point where people living with Usher Syndrome Type 1B, a widely neglected community, don’t lose their sight, which is an essential sense to experiment and experience the world around them. We know that this is possible because successful treatments for other kinds of retina conditions have already been approved by the Food and Drug Administration (FDA).

We work closely with European and international inherited retinal disease organizations and research teams such as Institut de la Vision, IOB, Foundation Fighting Blindness, and Usher Syndrome organizations such as Usher Kids UK, Usher Syndrome Ireland, Usher Syndroom, to generate community and build bridges to help cover the possible gaps.

Even though most of the research efforts we will be financing can benefit all three types of Usher, we will prioritize treatments for Usher Syndrome Type 1B, because it is the most severe and virulent form of this syndrome and is the type that affects our children.

Scientific Advisory Board

Giacomo Calzetti, MD

Ophthalmologist and Researcher at the Institute of Molecular and Clinical Ophthalmology Basel (IOB), Basel, Switzerland Principal Investigator at the Vista Vision Eye Clinic, Brescia, Italy

Bence György, MD, PhD

Assistant Professor at the University of Basel and Head of Ophthalmic Translational Research Group at the Institute of Molecular and Clinical Ophthalmology Basel (IOB).

Jaume Català Mora, MD, PhD

Pediatric Ophthalmologist at Sant Joan de Déu Children's Hospital in Barcelona, Spain

José María Millán Salvador, PhD

Researcher at the Instituto de Investigación Sanitaria La Fe (IIS La Fe), Valencia, Spain

Arnau Espinosa Manzanal

Co-Founder and Secretary

Board of Directors

Berta Adell Palau

Co-Founder and President

Arnau Espinosa Manzanal

Co-Founder and Secretary

Júlia Espinosa Manzanal

Co-Founder and Vice President.

Hermès Solé

Co-Founder and member.

Transparency

We are completely transparent with everyone who trusts us. We share our work and give an account of ourselves on a regular basis. For any question do not hesitate to contact us.

Foundation documents

Foundation Statutes

The foundation’s statutes are a legal document that defines the foundation’s purpose, structure, and governance.

Foundation Registration

Registration in the Registry of Foundations of the Generalitat de Catalunya

Resolution of the registration

Resolution of the registration in the Registry of Foundations of the Generalitat de Catalunya

Tax regime certificate

Support us

Become a friend!

You can become a friend of the Foundation and make a difference in the lives of the people affected by Usher 1B.

Our network and Friends

Organizations that play an essential role in promoting research, public awareness, and support for those suffering from hereditary retinal dystrophies and rare diseases related to blindness, such as Usher Syndrome, worldwide.