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Spring Newsletter
APRIL 2025
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Our Ongoing Commitment to Cure Usher Syndrome 1B
Spring is in full bloom, and as we enjoy the Easter season, at Save Sight Now Europe we continue to drive progress in the fight against Usher Syndrome Type 1B. We have signed our first funded research program for 2025, and remain committed to advancing gene therapy, preclinical models, and innovative approaches through collaborations with leading experts, hospitals, and research institutions across Switzerland, Spain, and Europe.
Beyond research, we are strengthening our community of supporters, building key partnerships, and ensuring that once treatments reach regulatory approval, access remains a priority.
Your support is invaluable in accelerating progress. We encourage everyone—especially those directly affected—to spread the word, engage, and join our mission. Together, we can make a difference.
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Advancing MYO7A Therapy: Funding Breakthroughs to Accelerate a Cure for USH1B
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Newly Funded Project: A Promising Gene Therapy Approach from Dr. Becirovic’s Team in Zurich
We are proud to announce that we are supporting an innovative and highly promising research program. Prof. Elvir Becirovic at the University of Zurich is working on a dual gene therapy approach for Usher Syndrome 1B, with two key studies on gene supplementation and activation using advanced CRISPR techniques.
Our funding will enable the development of crucial animal models—wild-type minipigs—bringing us one step closer to testing potential treatments.
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The Dr. David Gamm program at the University of Wisconsin-Madison, which we funded, has concluded, reaching a major milestone. The project has improved our understanding of MYO7A’s role in human photoreceptor cells and developed a crucial potency assay to ensure the effectiveness of future USH1B therapies. We are now awaiting the next steps to continue, as well as the support that Dr. Gamm and postdoctoral researcher Celia Bisbach will receive, thanks to these results, from the Foundation Fighting Blindness to further advance research toward treatment applications.
For more details on the achievements of this project and the upcoming steps, you can read the full news here.
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Our co-founder, Berta Adell, recently joined La Ciencia de lo Singular, a science podcast by Share4Rare and CIBERER focused on rare diseases. Alongside experts like Dr. Jaume Català (Pediatric Ophthalmology, Hospital Sant Joan de Déu), Dr. Carmen Ayuso (Scientific Director, IIS FJD/UAM, and first woman to receive Spain’s National Research Award in Medicine), and David Sánchez (Retina Murcia, ERN-EYE, RI), they discussed eye function, pediatric retinal dystrophies, current treatments, and ongoing clinical research.
Through collaborations like this, we continue raising awareness and driving research for retinal diseases.
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Ignite Hope: Join Us This Sant Jordi in Barcelona on April 23rd to
Raise Awareness and Support Usher Syndrome Research!
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We need volunteers and your help to spread the word!
Everyone is invited to visit our stand, share, and experience a meaningful moment while supporting our cause.
Come celebrate Sant Jordi with us and be part of the change!
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Driving Momentum: How Events and Action Are Accelerating the Path to a Cure for Usher Syndrome Type 1B
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An Evening of Music & Solidarity, La Tour Vagabonde Soirée in Fribourg was a complete success!
On March 1st, the Meyer family once again united friends, supporters, and music lovers at Tour Vagabonde in Fribourg for an unforgettable evening in support of Usher Syndrome Type 1B.
The night featured an insightful round table on USH1B research, a captivating live performance by Melissa Kassab, a delicious dinner, and an exciting raffle—all to advance vital research. The warm and inspiring atmosphere reflected a shared commitment to making a difference.
Thanks to the incredible generosity of all involved, the event raised 27,000 CHF to support research and bring hope to families affected by Usher Syndrome.
A heartfelt thank you to the Meyer family, Melissa Kassab, Pierre Meyer, and every supporter who made this night so special!
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Look at what we achieved together in 2024!
Every event brought us closer to a cure for childhood blindness caused by Usher Syndrome—and it’s also thanks to you!
La Nit de la Visió raised 30,000€, forging five major collaborations now driving research forward. Solidarity Paddle Tournament Badalona– 5,500€. Roses per Vèncer l’Usher – 2,000€. Leo’s Piggy Banks Initiative –1,150€. Solidarity Sandwich – 250€. Susher Cake – 470€. Cinc Cims Race – 2,350€. Rebel Genetics – 6,200€. Save the Colours Hoodies – 2,000€ …and many more initiatives that raised awareness, engaged new supporters, and strengthened our community!
Now, let’s make 2025 even bigger!
Ever thought about hosting your own Usher Solidarity Event? A charity race, a bake sale, a music night—any idea that raises awareness and funds makes a difference!
Be part of the movement—create your own Ush Event in 2025! Reply to this email or contact us here.
Together, let’s make 2025 a year of action, hope, and progress—working towards a future where no child faces vision loss.
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If you are from the Usher Community, don't miss this great event next June!
The International Symposium on Usher Syndrome, USH 2025, will take place in Nijmegen (NL) on June 19th-21st, 2025, organized by Usher Syndroom – Reaching Out for Sight and Sound.
For Our Spanish-Speaking Community: To ensure full accessibility, the AI-powered SpeakSee Autocaption app will provide real-time translations of lectures into your preferred language, making USH 2025 even more inclusive.
Join us for an unforgettable event that brings together science, community, and shared experiences to drive progress toward a cure.
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Stay Updated
Our next stop is in Barcelona in April to celebrate Sant Jordi—see you there!
Follow our journey as we prepare for ARVO next May, and Nijmegen before summer, and stay informed about the latest scientific progress and research updates in the field of
Usher Syndrome.
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Together, we’re shaping a future filled with hope and vision—a future where Usher Syndrome Type 1B no longer sets limits but drives innovation.
Thank you for being a vital part of this journey.
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