Save Sight Now

10/20/2026

Our USH1B families have an important opportunity to help shape the future of Usher syndrome treatments.

The Foundation Fighting Blindness is seeking patients and caregivers to share their experiences directly with the FDA, researchers, and treatment developers.

Your voice matters! Please consider participating and help ensure our community is heard. Details below! 👇

There are many ways to , and sharing your experience can help shape the future of Usher syndrome research.

The Foundation Fighting Blindness is looking for people living with all subtypes of Usher syndrome and their caregivers to share their experiences as speakers and panelists during our virtual Patient-Focused Drug Development (PFDD) meeting on April 8, 2027.

Your voice can help researchers, drug developers, regulators, and other key stakeholders better understand the experiences and priorities of the Usher syndrome community and inform the conversation around future treatments.

Learn more and submit a nomination: www.FightingBlindness.org/usher-pfdd

Thank you to AAVantgarde, Atsena Therapeutics, Eli Lilly, The Fairfield Fund, and Sepul Bio by Théa for their generous support of this meeting.

Image Description: Dark blue background with Foundation Fighting Blindness logo in top left corner. Text below reads, "Your voice can help shape the future of Usher syndrome treatments. Call for panelists: Usher Syndrome PFDD Meeting, April 8, 2027."

10/18/2026

Gala ticket sales close in just two weeks!

Watching your child struggle to read words on a page, play soccer, or see your face at bedtime is something no parent should have to face.

For Lia and thousands of others living with Usher syndrome type 1B, the race to develop vision-saving treatments is a race against time.

Behind that urgency is an extraordinary community of scientists, families, and supporters determined to change what comes next.

Meet just a few of the people helping make it possible. ❤️

Join us November 5. Tickets at the link in bio!

10/11/2026

09/28/2026

Gift of Vision is coming up fast!

Join us November 5 for great food, local w**e and b**r, live music, spirited bidding, and a room full of people coming together to help save the sight of children with USH1B.

Come for the cause. Stay for the bidding wars.

Tickets are on sale now! Link in bio.

09/19/2026

Today is Usher Syndrome Awareness Day.

Usher syndrome is the most common genetic cause of combined deafness and blindness.

Children and adults with Usher syndrome are losing their vision every day.

That’s why Save Sight Now exists: to turn awareness into action by funding and accelerating research toward treatments that can save their vision before more is lost.

Today, we’re incredibly grateful for our global Usher syndrome community—for sharing their stories, raising awareness, and helping more people understand what it means to live with Usher syndrome.

09/17/2026

Now is the time.

After years of building the tools, disease models and scientific network needed to pursue treatments for USH1B, Save Sight Now has entered a new phase.

That foundation is now supporting multiple treatment-focused programs in parallel:

* A gene-editing platform
* New large-gene delivery methods
* Drug repurposing
* Evaluation tools and disease models

The strategy is in place. Funding determines what moves forward.

We need to raise $1 million through 2027 to advance the most promising work.

For families living with USH1B, every year without a treatment means more vision lost.

Gift of Vision · November 5�
Help fund what comes next.

Tickets are on sale now:
https://www.savesightnow.org/gift-of-vision-2026

09/06/2026

The Gift of Vision Gala is back.

On November 5, we’re bringing our community together again for an incredible night of great food, drinks, music, unforgettable auction experiences — and a year that matters more than ever for Save Sight Now.

We’re moving faster than ever toward treatments that can preserve vision for people with Usher syndrome type 1B.

Now is the time.

Join us for one unforgettable night.

Reserve your seat below:

On November 5, we’re bringing our community together again for an incredible night of great food, drinks, music, unforgettable auction experiences — and a year that matters more than ever for Save Sight Now. We’re moving faster than ever toward treatments that can preserve vision for people wi...

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

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.

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...