Spring Newsletter

Welcome to our latest newsletter, brimming with updates and opportunities to engage with our cause. Your unwavering support is crucial in our journey to make a difference in the lives of those affected by Usher syndrome.

Upcoming trips: preparing for ARVO 2024

As we gear up for ARVO 2024, our primary focus lies on learning, networking, and disseminating our mission to facilitate the discovery of a treatment for Usher Syndrome Type 1B. This significant conference provides us with a valuable opportunity to engage with ophthalmologic experts and glean insights that can further our cause. We are enthusiastic about forging relationships that amplify our efforts and bolster the worldwide campaign against childhood blindness attributed to Usher Syndrome Type 1B. Our involvement at ARVO 2024 represents a pivotal stride in our dedication to fostering scientific progress in this domain.

First stop: IOB Basel and more

Before heading to ARVO, one of our primary stops is Basel, where we have several meetings lined up. Among these engagements is a significant session at the Institute of Molecular and Clinical Ophtalmology Basel (IOB), where we will meet with half of the Scientific Advisory Board of our Foundation, namely Professor Bence György and Dr. Giacomo Calzetti. This meeting presents a crucial opportunity to discuss potential advancements and outline a strategic roadmap for our ongoing and future projects.

Join us on our trips to the ARVO conference, Basel and Paris. Stay tuned for more details.

Roses to fight Usher's

Join us on April 23rd as we celebrate Barcelona's Saint George's Day! We're thrilled to be part of this meaningful donation drive in our hometown. Spread the word and join us in making a difference.



With your donation, you'll receive a rose and a pencil, and you'll be contributing to the fight against Usher Syndrome Type 1B. Together, we can rewrite the future for thousands of children!

Want to help?

Catalunya Ràdio and the Cultural Community Support Save Sight Now Europe!

"Les Bones Causes" (The Good Causes) is a segment on El Matí de Catalunya Ràdio with Ricard Ustrell that provides a platform to highlight and promote good causes and organizations. Once a month, we seize the opportunity to spotlight Usher Syndrome Type 1B and the objectives of Save Sight Now Europe.

Tune in to hear from the inspiring and talented individuals who have supported us and helped amplify our voice:



JORDI BOSCH

DANIEL ANGLÈS

CLARA SEGURA

MERCÈ MARTÍNEZ

Membership

Introducing our new membership option – a gateway to a deeper journey with our cause.

By becoming a member, you will have the opportunity to:

- Participate and vote on significant decisions at our General Assembly in Switzerland – ensuring your voice is heard no matter where you are!

- Attend our annual community update, where we share progress and achievements.

In November, we launched the Foundation in Spain and unveiled a new, immersive online experience on our website. Each visit offers fresh insights, updated resources, and interactive features to enhance your connection with our cause. Your feedback is essential to our ongoing growth, so we encourage you to explore the latest enhancements and share your thoughts with us at SSNEU.

Join us in this exciting new chapter!

BECOME A MEMBER!

Mario & Zürich Barcelona Marathon. Mi grano de Arena Challenge is about to end!

Mario Raúl Martínez is an ultradistance runner who lives with Usher syndrome and inspires his audience with his energy, resilience, and zest for life. Follow him on Instagram!

DONATE TO CHALLENGE

Rare Diseases Day at IMO

On Rare Diseases Day, we had the privilege of visiting the Institute of Molecular Ophthalmology (IMO) in Barcelona. During our visit, we engaged in insightful conversations with Dra. Esther Pomares, the esteemed chief of genetic research known for her discovery of Usher Type 4. This visit fostered a fruitful synergy, providing us with valuable perspectives from a team passionate about advancing ophthalmologic research. Their dedication and expertise in the field were truly inspiring and invigorating for our mission.

Your Support Counts: Ways to Donate

Explore different donation options that suit you, including one-time and monthly donations, a BIZUM code (08975) for the Foundation, and the Teaming group option to add to your donation a 1€ extra per month to speed up science.

We are currently working on Twint - stay tuned for new updates on Swiss option donation.

Our supporters and the organization itself are continually launching new challenges and campaigns, driving forward our impactful work. As the 'Mi Grano de Arena' campaign nears its conclusion, we're eager to reach our goal. Every contribution makes a difference. Explore our events and activities, and join us in growing the USH Movement. Your participation is key to our collective success!