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Summer Newsletter
JULY 2025
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Reflecting on a Year of Progress, Collaboration, and Global Momentum | |
As summer begins and we close the fiscal year, Save Sight Now Europe takes stock of a year full of progress: meaningful scientific advances, new strategic partnerships, and a growing community committed to our shared mission. We are proud to present our second Annual Report, along with the financial statements from both our Swiss and Spanish offices, and a renewed invitation to get involved.
This newsletter highlights key milestones from recent months: Our participation in major international conferences such as ARVO and USH2025, the strengthening of our research programs in France, Switzerland, and Spain, and the growing solidarity movement driving events and awareness initiatives across Europe.
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We are now preparing for an important autumn: On September 29, we will hold the General Assembly of Save Sight Now Europe Switzerland—a key moment to continue shaping our mission and future.
Throughout the month of September, we will also partner with Lulu et Nenette, a network of Swiss opticians, to raise awareness about Usher syndrome, especially on Saturday, September 20, the International Usher Syndrome Awareness Day.
And in November, we will come together again for an expanded edition of La Nit de la Visió, offering new ways to connect, participate, and stand up for the vision of children living with Usher syndrome.
Every step we take together, every gesture of support, brings us closer to a single goal:
to end childhood blindness caused by Usher Syndrome type 1B.
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We’ve published our full Annual Report and financial disclosures for both Switzerland and Spain.
Transparency is at the heart of everything we do: visit our Transparency section for more information. There you will find our roadmap, our goals, our actions, and our financial results.
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You’ll find several ways to donate on our website.
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Are you a company looking to support our cause? Let's talk!
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Science in Motion: From ARVO to Nijmegen
This past May, we participated in ARVO 2025, one of the world’s leading conferences in ophthalmology research. Promising breakthroughs were shared, including the latest results from AAVantgarde Bio’s LUCE‑1 clinical trial. This Phase 1/2 study—the first in humans using a dual AAV8‑MYO7A vector strategy to treat retinitis pigmentosa caused by USH1B—reported encouraging early safety data and visual improvements in patients after 180 days. Read AAVantgarde Bio’s press release
We also attended USH2025 in Nijmegen, the Netherlands, where scientists, families, and organizations came together to share progress and identify the challenges ahead. It was a pivotal moment to shape new pathways toward treating USH1B.
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What new research are we advancing?
- We are funding the work of Prof. Elvir Becirovic in Zurich, who is developing two complementary gene therapy approaches for MYO7A: gene supplementation using dual AAV vectors and CRISPR-based gene activation.
- We collaborate with Dr. Isabelle Audo’s team in Paris, focused on applying big data and artificial intelligenceto better understand and characterize Usher syndrome type 1B.
- We are supporting additional therapeutic avenues, including treatments aimed at slowing retinal degeneration, such as clinical trials with Nacuity Pharmaceuticals, TUDCA, and others.
- We are exploring new molecular therapeutic strategies in partnership with Dr. Bence György.
- We are also shaping future collaborations with leading researchers in France and Spain, with whom we share a strong alignment to drive innovative programs at the European level.
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This growing scientific network reinforces our mission: bringing real treatments to families living with Usher syndrome 1B. Ensuring that research is translational and clinically meaningful is essential to us—because it is the only path toward what drives us every day: a treatment to stop blindness in Usher syndrome.
Visit our Research section online to learn more about the programs we support.
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Giving Voice to Usher
Catalunya Ràdio & “Les Bones Causes”
Throughout this year, we’ve continued participating in “Les Bones Causes”, a segment on Catalunya Ràdio aimed at raising awareness and fostering empathy. It has been a valuable platform to share the reality of Usher syndrome with a broader audience.
Thanks to the voices and generosity of eight well-known Catalan figures from the cultural, journalistic, and sports sectors, we’ve given greater visibility to our mission and to the urgent need for treatments.
We are deeply grateful to Marta Pontnou, Dani Alegret (Els Amics de la Arts), Elisenda Pineda, Aitana Bonmatí, Berto Romero, Raquel Sans, Julio Manrique i Marta Tomasa —your support and voices have been powerful and inspiring!
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The USH Movement Grows Because of You
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| On June 13, 589 students from the Cycle d’Orientation de Sarine Ouest in Fribourg, Switzerland laced up their shoes and ran for research. To mark the school’s 20th anniversary, they organized a solidarity run in support of Save Sight Now Europe—deeply inspired by the story of the Meyer family and their 6-year-old son Félix, who lives with Usher syndrome type 1B. | | |
Thanks to the collective energy and effort of students, teachers, and families, the event raised CHF 14,430—a tremendous boost that will allow us to keep funding research that can truly change lives.
Our heartfelt thanks go out to all participants, sponsors, and especially to the Meyer family, for connecting hearts and strides in this shared cause. Learn more about this initiative here.
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Campaigns That Go to great lengths
Cristina Garcia de Mateo, relative of a young girl with Usher syndrome, recently presented our work to 3Cat and her company’s Teaming group. Thanks to her outstanding campaign, we’ve been selected as the beneficiary of their 2025–2026 fundraising drive.
This support means we’ll be able to accelerate our research funding in meaningful ways.
To everyone who voted for us—and especially to Cristina: thank you for believing in our mission and standing with us.
We’re incredibly grateful to all the individuals and organizations who have taken initiative, mobilized their communities, and raised funds—allowing us to support high-potential research teams committed to bringing real treatments to patients.
More than 15 solidarity events have taken place across Europe this year… and there’s more to come!
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Visit our Events section and learn how you can organize your own initiative.
Every event matters. Every action counts.
Each gesture makes a difference. Every step moves us forward.
Join us—help move the world toward a cure for Usher syndrome type 1B.
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La Nit de la Visió Returns This November
Our flagship event is back in November 2025, and this year it’s going bigger and bolder than ever!
La Nit de la Visió will grow into more than just one evening, offering new ways to engage, connect, and stand up for children’s vision.
In the weeks leading up to the event, we’ll launch new initiatives open to everyone—an exciting opportunity to get involved, spread awareness, and help the light reach even further.
Help us spread the word!
The more voices we have, the further we’ll go.
Stay tuned—we’ll be sharing all the details very soon.
Get ready to be part of something truly meaningful!
| | Wishing You a Wonderful Summer! | |
As we wrap up this vibrant year, here are some important dates to keep in mind—we warmly invite you to be part of everything ahead:
- July – We release our second Annual Report: a full overview of what we’ve achieved this year, with complete transparency on our actions, impact, and financial reports from both Spain and Switzerland.
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September – Raising awareness of Usher syndrome with Lulu & Nenette (Switzerland). Throughout the month—and especially on Saturday, September 20, International Usher Syndrome Awareness Day—we’ll carry out awareness actions in collaboration with these solidarity-driven opticians.
- September 29 – General Assembly of Save Sight Now Europe Switzerland. You're invited to follow our progress and decisions up close!
- November – La Nit de la Visió returns—bigger than ever! The 2025 edition will expand beyond a single night, offering new and creative ways to participate both before and during the event. Stay tuned this summer for the launch of pre-event initiatives—we’ll need your help to spread the word and ensure broad, enthusiastic participation!
- Always – Join us. Collaborate. Amplify the USH movement. Make a donation, volunteer your time, or simply share our message. Every contribution matters, and we are deeply grateful.
Save Sight Now Europe: working to cure childhood blindness
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