If you want to be in the know about what’s going on at our organization, you’ve come to the right place.

Be sure to check back regularly to get our latest news updates.

Research out of our University of Maryland research lab describing success with a gene therapy approach utilizing dual AAV vectors to deliver our large gene

Research from our team at the University of Oregon Institute of Neuroscience demonstrates that a potent antioxidant. Hexafluoro, made from the maple tree, shows promise in treating Usher 1F and, potentially, other types of Usher syndrome.

Another promising gene therapy from our Harvard researchers, this one using dual vectors to deliver the large Usher 1F gene.

Harvard researchers hope at least one will treat progressive blindness caused by Usher syndrome type 1F

Exciting news! - Our Harvard Medical School researchers reported at the 2023 ARVO conference that they have restored vision in our zebrafish model with their Usher 1F mini-gene.

We write to you today as board members of Usher 1F Collaborative, but our story that brought us here is a bit different than our board peers. Our families are not personally impacted by this genetic disease. However, we have walked side by side with our friends whose lives were turned upside down and we felt compelled to join them in their battle to improve the future for their children.

A publication out of David Corey's lab at Harvard Medical School describing yet another gene therapy approach his team has developed. A big thank you to David Corey, Maryna Ivanchenko, and their team!

A team led by researchers at Harvard Medical School, Massachusetts Eye and Ear, and The Ohio State University has made an important first step toward developing a gene therapy for Usher 1F.

The research, conducted in mice, is described Apr. 26 in Nature Communications.

With excitement we recognize that 2023 marks the Ten-Year Anniversary of the founding of Usher 1F Collaborative. Together with your support, we have accomplished so much in a relatively short period of time.

While it is important to report our achievements to this point, today we write about our future. Time shows us no mercy as those who live with Usher 1F face a continuous narrowing of their vision.

"Rather than sitting back and accepting the fate of my son's eye condition to come, we knew we had nothing to lose, we began fundraising from Canada. There is power in numbers and the goal is to reach as many people as possible to help get that cure!

"THAT IS WHY WE ARE HONORED TO ANNOUNCE THAT USHER 1F COLLABORATIVE WILL BE EXTENDING INTO CANADA! Because of our affected families and donors in Canada, we have incorporated here and are just awaiting our charitable status to fully launch!"

"Our daughter Tzila is a strong young woman – a mother to two beautiful boys, a committed wife, and a dedicated social worker. She also lives with Usher 1F, adding a plate full of daily challenges to her life. As her parents, we are immensely proud of her success, but it is vital to us that a cure is developed for her vision loss."

Brendan, who has Usher 1F, is becoming part of the team seeking a cure. He graduated college with his Bachelor’s degree in Biochemistry & Molecular Biology, is currently doing a fellowship at the National Institutes of Health (NIH) in Bethesda, MD, and applying to PhD programs. His parents, Stacey and David, are incredibly proud of his accomplishments and ambitions.

Read the latest news and research updates from Usher 1F Collaborative.

Usher 1F researcher Livia Carvalho, PhD, is part of this team.

The Association for Research in Vision and Ophthalmology (ARVO) conference is the most significant international vision research conference in the world. Maryna Ivanchenko, MD, PhD, et. al. presented their work and success developing a dual vector gene therapy for Usher 1F.

"The labs of Artur A. Indzhykulian, MD, PhD, Assistant Professor of Otolaryngology–Head and Neck Surgery at Harvard Medical School (HMS), and David Corey, PhD, Bertarelli Professor of Translational Medical Science in the Blavatnik Institute of HMS, have recently received a $1 million Blavatnik Therapeutics Challenge Award for their collaborative research on the treatment of Usher syndrome 1F, a rare – albeit debilitating – form of Usher syndrome."

Diego and Emilia Rodrigues live in São Paulo, Brazil, and are parents to Liz, age three, who has Usher 1F. Read their story.

Chase and Jax are brothers with Usher 1F. Read their story as told by their mom Ally.

Amanda is a PhD student in the lab of Usher 1F researcher Vincent Tropepe at the University of Toronto, Toronto, Canada, investigating disease modelling for retinal development and disease mechanisms. She is first author on ‘ Usher syndrome type 1-associated gene, pcdh15b, is required for photoreceptor structural integrity in zebrafish’, published in DMM. (PCDH15 is the gene on which mutations cause Usher 1F.)

Anna, who has Usher 1F, talks about her life, her hopes, and her dreams for the future.

Our Usher 1F Collaborative funded research team at the University of Maryland have identified a promising drug therapy and plan to take it to clinical trial.

Read our latest newsletter with stories and updates on research.

On September 29th, 2021, the Red Meat Lovers Club hosted an epic fundraiser in Verona, NJ, for Usher 1F Collaborative, raising $26,000 for research.

"Administration of exogenous 9-cis retinal, an analog of the naturally occurring 11-cis retinal, improved ERG amplitudes in these mutant mice, suggesting a basis for a clinical trial of exogenous FDA approved retinoids to preserve vision in USH1F patients."

Read our newsletter to learn about our latest updates, including exciting news about our conference and RUSH1F natural history study.

COLUMBIA, Maryland – April 29, 2021 – Foundation Fighting Blindness, the world’s leading organization committed to finding treatments and cures for blinding retinal diseases, is partnering with the Usher 1F Collaborative, a family-founded nonprofit driving research for Usher syndrome type 1F (USH1F), to launch a natural history study, the Rate of Progression in PCDH15-Related Retinal Degeneration in Usher Syndrome 1F (RUSH1F). The project will help identify outcome measures for future clinical trials of potential USH1F therapies.

Eight-year-old Zachary Root, with a little help from his parents and his dad’s college friends from the University of Arizona, launched the Usher 1F Cereal Challenge on February 13th. While we had high hopes for this virtual fundraising campaign, we never could have anticipated the response and outpouring of support. Thank you so much to everyone who has joined us!

We wanted to update you on the amazing progress your support has made possible. With over 1000 videos posted on social media, not just across the U.S. but also around the world in Canada, Australia, Switzerland, and the U.K., to date the Cereal Challenge, #Usher1FCerealChallenge, has brought in $150,000 for much needed Usher 1F research.

Our Cereal Challenge is still going on. If you haven’t joined us yet, check out #Usher1FCerealChallenge on Facebook and Instagram, and join the Challenge to help us reach our $250,000 goal, which will fund a year of research at two of our research labs!

This is our Usher 1F gene - "With support from our generous donors, Dr. Tropepe will be studying how mutations in the Pcdh15b gene – a gene that affects approximately 20% of patients with USH1- affects photoreceptor structure and function in zebrafish."

Please enjoy our Fall/Winter 2020 newsletter.

Watch David Corey, PhD, Harvard Medical School, describe his promising gene therapy research for Usher 1F.

Read our latest news and updates

Update on Usher 1F research during this difficult time

The laboratory of CSB Chair Vincent Tropepe has received funding from Fighting Blindness Canada to conduct research using zebrafish to study Usher syndrome type 1F. Loss of vision in Usher 1F is the result of retinal degeneration, but the mechanism through which degeneration happens in unknown.

Clues to the way retinal degeneration happens in Usher 1F can be found in the zebrafish model organism. The gene that is altered in those with Usher 1F is also present in zebrafish, and mutations in zebrafish that mimic the Usher-linked changes in this ‘protocadherin’ gene can result in reduced hearing and vision.

Usher 1F Collaborative is thrilled to announce our selection as a recipient of a Chan Zuckerberg Initiative Rare As One Project grant. This grant will enable us to grow and ensure our sustainability moving forward so that we can continue to fund vital research until we are assured that everyone with Usher 1F can continue to see the future. We are excited to be part of the Rare As One Project team!

RI USH SIG – Special Interest Group for Usher Syndrome at Retina International: Update on events & resource file on USH subtypes, genetic testing & USH genes

Dorie's mother, Laurie Shapiro, talks about her journey as an Usher 1F parent.

Dorie Shapiro talks about living and coping with Usher 1F. Read her story.

Jaime Recht, who has Usher 1F, ran both the Berlin and New York marathons and raised $2000 for Usher 1F research with both races. Read about Jaime's experiences in Berlin and New York.

Little Ebba's story as told by her parents, who are desperate to save her from a life of fading vision

David Corey and his colleagues at Harvard Medical School are trying to develop gene therapy methods to treat the deafness and blindness of Usher 1F.

In 2013, after learning that the lack of an animal model was hindering research for a cure for Usher 1F, Usher 1F Collaborative was founded. Fast forward six years. We now have our two animal models, a zebrafish and a mouse. We just held our second Usher 1F researchers meeting in Vancouver, Canada. The room was an exciting sight, filled with nine researchers, two pharmaceutical company representatives, and seven parents. Seven researchers updated us on their work toward multiple paths to an effective treatment. Now that we have our animal models, the presentations focused on treatments in development and on collaborations to test these treatments on our animal models. We have done the background work, and now we are ready for the exciting part. 

Read more about our progress and plans.

Our second Usher 1F researchers meeting was an exciting event. On May 2, 2019, nine researchers, two pharmaceutical company representatives, and seven parents gathered to hear updates on research for a cure for the vision loss of Usher 1F. Read about the highlights of our meeting.

Toward a therapy for deafness and blindness in Usher syndrome

Two HMS neurobiologists studying the origins of deafness—Corey and Artur Indzhykulian, HMS assistant professor of otolaryngology at Massachusetts Eye and Ear—are joining forces with Botond Roska, an expert on retinal biology and eye disease at the Institute of Molecular and Clinical Ophthalmology in Basel, Switzerland, to develop treatments for a form of Usher syndrome.

Corey and Indzhykulian’s work will focus on a particularly severe form of the disease, known as Usher syndrome type IF.

When we began Usher 1F Collaborative in December 2013, we had $2000 in the bank and one researcher who had Usher 1F as a future initiative. Our initial goal was the development of an animal model on which to test potential new treatments. Five years later, we now have two animal models a zebrafish and a mouse, both of which share all three human Usher 1F traits, deafness, poor balance, and progressive vision loss, and six research groups actively working on a cure.

David Corey, PhD., is the Bertarelli Professor of Translational Medical Science, Department of Neurobiology, Harvard Medical School. He has previously studied the Usher 1F gene and has now taken on developing gene therapy for the vision loss of Usher 1F.

“Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.” ~Harriet Tubman We have succeeded, in […]

David R. Cox Scholarship for Rare Compassion This is a terrific opportunity to educate up and coming physicians about Usher 1F and to interest more researchers in helping us find a cure. If you have […]

By Livia Carvalho, Ph.D. The road towards testing gene therapy treatment strategies for Usher 1F has recently been joined by a new collaborative effort between research labs in the US and Australia. The labs of […]