Usher Syndrome Blog and News

The latest USH blog posts and various news items impacting the Usher syndrome community. 

In the summer of 2022, Endogena launched its first dosing of its phase 1/2a study of EA-2353 in retinitis pigmentosa (RP).

A recent publication outlines a study of transcorneal electrical stimulation (TcES) as a means to slow the progression of visual field loss in patients with retinitis pigmentosa (RP).

Dr. Corey's goal is to rescue vision, but he is testing first on hearing because it’s easier to measure in a mouse model. Because babies with Usher 1 are born profoundly deaf but sighted, researchers believe that the hearing is more sensitive to the absence of the protein than vision. Therefore, if a gene therapy rescues hearing, theoretically, it should also rescue vision.

Meet with your Members of Congress and their staffers to share your story about Usher syndrome, the most common genetic cause of deafblindness, and advocate for Usher syndrome research. 

Martha Neuringer, Ph.D., leads the research team at OHSU, Oregon Health & Science University, that confirmed the first-ever nonhuman primate model of Usher syndrome.

Dr. Neuringer's lab created a monkey with the MYO7A mutation that causes Usher Type 1B. For the first time, an animal model demonstrates all three phenotypes of USH1B: deafness, impaired balance and retinal degeneration.

This is significant because primates are the closest genetic cousins to humans, and having this animal model allows scientists to better understand Usher syndrome and test potential treatments.

In 2022, the Usher Syndrome Coalition partnered with ProQR to provide outreach and education for their clinical trial. That trial is now paused. Here are some steps you can take to make sure you're ready for future clinical trials.

With IP Relay, DeafBlind users can make and receive calls and communicate the way they want to whenever they need to. But what is IP Relay?

In this video, you will learn about the benefits of the new Usher Syndrome Data Collection Program, how to join, and more. Captions and ASL interpretation are included. Access the transcript and slides on our website.

Your story matters, and it is important for your Senators and Representative to know that Usher syndrome affects individuals and families in their home state, as well as in every state across the country.

The Usher Syndrome Coalition is planning an "USH Day on Capitol Hill" on Wednesday, September 14th to advocate for increased federal funding for Usher syndrome research.

Lutein is a dietary carotenoid found in the eye with reported anti-oxidant properties.

Researchers at the National Eye Institute (NEI) have found that the cells that make up the retinal pigment epithelium (RPE, cells in the retina that supports the photoreceptors) have 5 distinct subpopulations.

Researchers at the John A. Moran Eye Center at the University of Utah and Scripps Research have used the retina to study how neurons die and how they can be revived.

Parenting, in general, is filled with challenges. Being a parent with Usher syndrome can add another layer of complexity. Here, USH moms share their advice for parenting with Usher. 

West Virginia University (WVU) received an $11 million grant from the National Institutes of Health (NIH) to establish a new visual sciences Center of Biomedical Research Excellence (COBRE).

Currently, there is an unmet need for technologies to treat vision loss because of photoreceptor degeneration. Researchers at the University of Southern California (USC) have come up with a new idea.

We can't share podcasts with the Usher syndrome community until there are transcripts available. Become a leader in accessibility and inclusivity in the podcast industry.

Researchers led by Richard Kramer at the University of California, Berkeley, have discovered that Antabuse (disulfiram), which was a drug that use to be used to wean alcoholics off of drinking is also able to help improve sight in mice with retinal degeneration.

Tom, a member of our Usher community shares some tips that he has found helpful as an older adult with Usher syndrome type 2a. Please note that these tips may not be applicable for everyone as this is written from the experience of one person.

India times wrote an opinion piece about the futuristic aspect of bionic eyes research progression.

In a guest column at, the authors discuss the past and exciting future prospects of optogenetic therapies.

Researchers at the University of Wisconsin School of Medicine and Public Health were able to create retinal cells from human stem cells that can detect light and change it to electrical waves.

Bionic Vision Technologies, a company in Australia has created the world’s first bionic eye that can restore partial, functional vision to people who have lost their vision due to retinitis pigmentosa (RP).

Announcing our partnership with ProQR to support clinical trial enrollment for a potential therapy for USH2A mediated retinitis pigmentosa

Researchers in China successfully created an induced-pluripotent stem (iPS) cell line using immune cells from the blood of a patient with Usher syndrome type 2A.