Save Sight Now

05/14/2026

At ARVO this year, we didn’t just attend — we got to work.

We used it as an opportunity to convene some of the world’s leading retinal researchers and clinicians to help shape our Usher syndrome type 1B funding strategy and identify the work most likely to lead to treatments.

* Hosted our first USH1B workshop with our Scientific Advisory Board and field leaders
* Aligned with our parent led partner organizations: , , and ( Consortium) to push faster, together
* Spent time with teams actively working on potential treatments

There is real progress happening — but there are no guarantees.
Trials often fail. Exclusion criteria limit access. Too many children and adults are still left out.

So we’re not betting on a single path. We’re advancing multiple approaches and prioritizing what has the best chance of reaching patients in time.

Grateful to our SAB, researchers, and clinicians who showed up ready to think critically and help us define and prioritize our funding roadmap.

GeneTherapy

05/08/2026

‼️AUCTION ENDS IN 3 DAYS‼️
Don’t miss this amazing opportunity to get World Cup tickets to see England V Panama

2 VIP tickets at 1/4 of the price 🎟️

Auction ends May 10 📅

Link in Bio and @ savesightnow.org

All proceeds go towards vision saving research for Usher syndrome

04/24/2026

2 VIP FIFA World Cup tickets!

We’re auctioning off 2 VIP seats to the 2026 FIFA World Cup — England vs. Panama
📍 MetLife Stadium, East Rutherford, NJ
📅 June 27

A rare chance to be there in person for one of the biggest sporting events in the world—while directly supporting sight-saving research for children and adults living with USH1B.

Every bid helps move real science closer to patients.

Starting bid: $2,000
Auction is live now.
🔗 Link in bio

Bid, share, and help get treatments to the people who need them.

Bid on VIP World Cup tickets: England vs Panama at MetLife Stadium. Premium sideline seats with hospitality. Proceeds support Save Sight Now.

03/08/2026

T&B Sports has been part of the Save Sight Now story since the very beginning.

After reading about Lia in the local paper when the girls were babies, they stepped up and have been incredible supporters ever since.

They’re hosting their annual hotdog fundraiser at the shop. If you’re picking up gear for opening weekend, stop by and show them some love. 🌭🩷
b.sports

01/18/2026

USH1 VESTIBULAR SURVEY CLOSING

Last month, Save Sight Now launched a vestibular survey for Usher syndrome type 1 in partnership with Dr. Hinrich Staecker and the University of Kansas.

Dr. Staecker’s team, collaborating with researchers in Germany and supported by MED-EL, is preparing a Phase 1 clinical trial in Germany focused on restoring balance in individuals with USH1B. This approach has restored balance in mice and demonstrated safety in non-human primates, with plans to move forward.

To support this effort, Dr. Staecker asked Save Sight Now to help gather direct input from USH1B and other USH type 1 families through a brief, confidential, two-minute survey. The goal is to better understand how vestibular challenges affect daily life and whether a balance-restoring treatment would be meaningful.

:: Why this survey matters ::
To advance this therapy toward clinical trials, researchers and industry partners need clear data on:

- The real-world impact of balance issues
- Whether families view a balance-restoring treatment as meaningful
- Evidence of patient interest and demand

The survey closes next week. If you or someone you know has Usher syndrome type 1 and would like your voice heard, please take a moment to participate using the link below.

The survey is available in English, Spanish, French, German, and Italian. If you need access in another language, please reach out.
English survey link: https://docs.google.com/forms/d/e/1FAIpQLScckmGA1YgT5p0mWpx5Wotk4kvBc1PXSbl6zKbArNxcNaUrlA/viewform?usp=sharing&ouid=104005644265185242355

Thank you to Savesightnoweurope , Usher Kids UK , and UsherKids Australia, for collaborating on the creation of the survey and to the Usher Syndrome Coalition for sharing it more broadly within the community. Please reach out with any questions

This short anonymous survey is intended for individuals with Usher syndrome Type 1, or caregivers of children/young people with Usher syndrome Type 1, who experience balance challenges. No personal information will be collected. Why this matters: This information will help researchers understand how...

12/30/2025

2025 was a turning point for Save Sight Now.

We became an independent nonprofit, grew our team, and hosted our first USH1B Research Strategy Forum, bringing scientists, investors, and industry leaders together to chart the path toward treatment.

As we close the year, we’re asking for support to keep this momentum going — with a special year-end match up to $250k - helping your gift go further.

If you’ve already given — thank you. If you’re able to give before Dec 31, it truly makes a difference.

DONATION LINK: https://donate.savesightnow.org/campaign/702789/donate

Rosalyn, Justin & Lia

12/01/2025

✨Tomorrow is Giving Tuesday, and all gifts are being matched up to $250,000 through year-end.

We’re entering a new chapter focused on accelerating our path to a USH1B treatment and clinical trial.

Over seven years, this community has raised $3M and funded six key research projects. Now, as an independent nonprofit, we can move even faster - advancing the work aimed at moving USH1B therapies into the clinic.

If you’re able, please consider a Giving Tuesday gift.

Your support helps us find a treatment before it’s too late. Thank you! ❤️

12/01/2025

Tomorrow is Giving Tuesday, and all gifts are being matched up to $250,000 through year-end.

We’re entering a new chapter focused on accelerating our path to a USH1B treatment and clinical trial.

Over seven years, this community has raised $3M and funded six key research projects. Now, as an independent nonprofit, we can move even faster - advancing the work aimed at moving USH1B therapies into the clinic.

If you’re able, please consider a Giving Tuesday gift.

Our latest video shares what’s at stake and why your support matters now more than ever.

11/16/2025

Gift of Vision 2025 → over $500,000 raised for Usher syndrome type 1B research.
Our first gala as an independent nonprofit — and our most powerful yet.

Thank you to everyone who showed up, supported from afar, and continues to believe in this mission. The momentum from this night is already shaping our next phase of work.

11/06/2025

Tonight’s the night!
Doors open at 5:30.
The room is sold out.

If you’re one of the lucky 200 joining us in Mill Valley tonight — get ready.

We’ll be pushing vision-saving research forward again — year six — and we’re going to enjoy every minute of it.

LFG