Usher 1F Collaborative

08/29/2026

"Inherited retinal diseases (IRDs) are a genetically and clinically heterogeneous group of disorders caused by pathogenic variants in more than 250 genes.1,2 Mutation-specific gene augmentation and gene editing have transformed care for a small subset of patients, yet the sheer genetic diversity and cost of developing “one therapy per gene” mean that most individuals with an IRD still lack an approved treatment.1,2 As a result, gene-agnostic strategies may broaden treatment options by targeting shared downstream pathways rather than individual mutations.3-5 These broader therapeutic approaches aimed at preserving or restoring vision are gaining increasing attention.1"

Emerging gene-agnostic strategies target shared pathways and offer options for IRD patients without mutation-specific therapies.

08/25/2026

Massive genomic newborn-screening studies are under way all over the globe. But questions about scalability, feasibility and net benefit remain.

08/23/2026

🚨 FINAL DAY! 🚨

usher1f.org/nanas-deli

Today is your last chance to win a $400 gift certificate to Nana’s Deli in Livingston, NJ!

For every $20 donation to Usher 1F Collaborative, you’ll receive one entry into the drawing. Enter once—or enter more than once to increase your chances!

And remember, this raffle is about so much more than a great meal. Every entry helps fund the research that is bringing us closer to treatments for the vision loss caused by Usher 1F.

A huge thank you to Nana’s Deli for generously donating this prize and supporting our mission!

08/22/2026

Why our researchers started developing retinal organoids early in our journey toward a cure -

A Seismic Shift From Animal to “Human-Based” Research Is Underway—Here’s What to Know About Organoids

This Medical News article discusses a push for human-centric research models, such as mini-organs grown from human cells, to complement or replace animal studies.

08/18/2026

⏰ Time is running out!

There’s still time to enter for your chance to win a $400 gift certificate to Nana’s Deli in Livingston, NJ—perfect timing as the season of holidays, family gatherings, and entertaining approaches.

For every $20 donation to Usher 1F Collaborative, you’ll receive one entry into the drawing. And while one lucky winner will take home the Nana’s gift certificate, every entry helps move us closer to something much bigger: a future without blindness from Usher 1F.

A special thank you to Nana’s Deli for generously donating this prize and supporting our mission.

Enter to win at www.usher1f.org/nanas-deli

08/14/2026

Usher 1F Collaborative is working to bring sight and joy to those with Usher 1F just as Manny has experienced.

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At first, Manny didn’t notice any changes after surgery. Friends and family constantly asked whether his vision had improved, but progress was gradual. Then, one afternoon while coming home from the office, something happened that stopped him in his tracks.

The sun was shining on the left side of his face when he suddenly noticed movement in an area he normally couldn’t see.

“I thought it was a bird,” recalls Manny. “Then I realized it was a car.”

For the first time in years, Manny experienced something he never thought possible again, he could detect movement in part of his peripheral vision, and the emotion overwhelmed him.

“I slowed down because I couldn’t believe it,” says Manny. “People don’t realize how important that is for someone like me. Opening up even a little more of that window of vision means the world to me. I cannot put words to it.”

After decades of adapting to vision loss from retinitis pigmentosa (RP), Manny Fernandez became one of the first people to receive an experimental gene therapy in a clinical trial. The experience not only restored a small part of his peripheral vision but also renewed his hope for the future and ins...

08/11/2026

NJ and NY friends -

The season of gathering is almost here!

Holiday meals, family celebrations, football Sundays, dinners with friends… there are plenty of reasons to gather around the table in the months ahead.

And $400 to Nana’s Deli in Livingston, NJ could make your next gathering even better!

Donate $20 to Usher 1F Collaborative and you’ll be entered to win a $400 Nana’s Deli gift certificate. Enter more than once for additional chances to win!

Best of all, every entry supports research working toward treatments for the vision loss caused by Usher 1F.

A huge thank you to Nana’s Deli for generously donating the gift certificate and supporting our mission.

www.usher1f.org/nanas-deli

08/06/2026

Usher 1F patients Rachel and Jessica Chaikof, along with Usher 1F parent Stacey Ashlund, share their experiences with rare disease and provide patient and caregiver perspectives on gene therapy for hearing and vision loss.

In this video of the SCGE Meet the Expert series, panelists provide...

08/03/2026

🎉WIN A $400 NANA'S DELI (LIVINGSTON, NJ) GIFT CERTIFICATE 🎉

www.usher1f.org/nanas-deli

For every $20 donation to Usher 1F Collaborative, you'll receive one entry to win a $400 gift certificate to Nana's Deli in Livingston, NJ.

Every donation entry helps fund groundbreaking research to develop treatments for the vision loss caused by Usher 1F.

Together, we're bringing hope to families and moving promising science closer to the clinic.

A heartfelt thank you to Nana's Deli for generously donating this incredible prize and supporting our mission.