Usher Syndrome Blog and News

Registration is open for USH2025, the 5th International Symposium on Usher Syndrome! The Scientific Conference and Congrestival, hosted by the Dutch Usher Syndroom Foundation, will take place in Nijmegen, the Netherlands, on June 19, 20 and 21, 2025.

Learn about the Usher Syndrome Coalition’s partnership with Sepul Bio to support enrollment in the LUNA clinical trial, a Phase 2b study testing ultevursen, a potential RNA therapy for USH2A-mediated retinitis pigmentosa.

Sepul Bio launches the LUNA Phase 2b clinical study to test ultevursen, a potential mRNA therapy aimed to help people with Usher syndrome type 2a maintain their vision.

As we approach the season of giving thanks, it can be helpful to remember that gratitude and kindness are simple practices that can have a positive impact on how we feel.

Personal health literacy is defined as the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

On September 16, 2024, AAVantgarde announced that the first participant received a dose in the Phase 1/2 LUCE-1 clinical trial for vision loss caused by Usher syndrome type 1B.

Exploring the challenges of living with Usher syndrome and the importance of disability equity in the workplace.

Attending the Usher Syndrome Coalition's USH Connections Conference for the first time can evoke a wide range of emotions. It can be incredibly empowering to connect with others who truly understand your experience, who "get it." At the same time, it may raise questions about the future, such as, "What will my life be like?" or "What can I do now if there aren’t yet any available treatments?"

Founded in 1995, DeafLEAD provides extensive support to Deaf, Hard of Hearing, Late-Deafened, and DeafBlind individuals.

The benefits of movement are many: movement helps you stay healthy, improves your mental health, and builds community and self-esteem. Here are some tips to make movement and exercise more “Usher syndrome friendly.”

As a mental health provider, I understand that multiple feelings can be true at the same time. It is possible to both value and uphold the ability to self-advocate while sometimes needing a break.

Researchers at UC Santa Barbara have discovered a novel approach to treating degenerative diseases by studying the role of the ZIP7 protein in fruit flies.

April is Stress Awareness Month. In the Usher syndrome community, additional stressors may be placed on caregivers and the individuals living with Usher syndrome themselves.

Nanoscope Therapeutics announced positive top-line results from a Phase 2b trial of MCO-010 for retinitis pigmentosa (RP).

This study looked at the support needs of Australian parents with children who have Type 1 Usher syndrome. Researchers interviewed parents to learn about their experiences and needs.

Humor has been proven to be a valuable resource in stress management. A good sense of humor won’t cure Usher syndrome but it can help you manage it. If this is something you struggle with, don't worry, you're not alone! Fortunately, humor is a skill that can be learned, with practice.

In order for a potential gene therapy for a retinal degenerative disease to be effective, there needs to be a good way to deliver the therapy to the photoreceptors in the retina.

This study explores the role of CLRN1 mutations in Usher syndrome type IIIA (USH3A).

Patients with Usher syndrome, a genetic disorder that causes both hearing and vision impairment, often rely on accessibility tools to manage daily life.

Mutations in a protein called CRB1 (Crumbs homolog 1) can cause retinal degeneration, specifically Leber congenital amaurosis (LCA) and retinitis pigmentosa (RP).

LambdaVision is a biopharma company developing the first protein-based artificial retina to restore meaningful vision for patients who are blind or have lost significant sight due to advanced retinal degenerative diseases, including retinitis pigmentosa (RP).

For better or worse, the media can profoundly influence our views on disability, our beliefs about ideals and cultural norms, and our sense of self. While there is room for improvement, disability representation is becoming more prevalent in the media. This includes the representation of Usher syndrome.

Ascidian Therapeutics announced that the FDA has approved testing their new drug, ACDN-01, in humans and given it Fast Track status.

Cones, the photoreceptor cells responsible for color vision, daylight vision, and detail perception in human eyes, are the focus of the research conducted by scientists Gustavo D. Aguirre and William A. Beltran from the University of Pennsylvania.

Akouos, Inc. is a subsidiary of Eli Lilly and Company that focuses on the development of gene therapies for the treatment of hearing loss and deafness. Their new investigational dual-AAV gene therapy, AK-OTOF, has been in Phase 1/2 clinical trials and targets the otoferlin (OTOF) gene.