The latest USH blog posts and various news items impacting the Usher syndrome community.
The Usher Syndrome Coalition urges bipartisan, bicameral oversight hearings about the Executive Branch's current and expected actions to illegally restructure the Department of Education, including the Office of Special Education and Rehabilitative Services (OSERS). History has taught us that leaving the enforcement of civil/educational rights laws up to certain states and districts can harm vulnerable communities, especially children with disabilities.
AAVantgarde is working on a new gene therapy and has launched a clinical trial for people living with Usher syndrome type 1B.
The Usher Syndrome Coalition is proud to announce a partnership with Eli Lilly and Company (Lilly) and Akouos, a hearing research company, to support clinical trial enrollment for a potential therapy for USH3A-related hearing loss.
The RUSH2A Natural History Study follows people with USH2A-related Usher syndrome type 2A or non-syndromic RP to understand how their vision changes over time. After four years of data from more than 100 participants, the Foundation Fighting Blindness is sharing the information publicly to support better clinical trials and new treatments. The nine-year study uses consistent vision tests and has already produced important findings that will help guide future therapies for the Usher syndrome community.
The RUSH2A Natural History Study follows people who have changes in the USH2A gene that cause Usher syndrome type 2A or non-syndromic retinitis pigmentosa (RP).
Nanoscope Therapeutics has started the FDA review process for MCO-010, a new treatment that could help people with retinitis pigmentosa and Usher syndrome see light and shapes again. In studies, people kept their vision improvements for up to three years after just one injection, with no serious side effects. Because MCO-010 doesn’t focus on a single gene, it may also help people with other eye conditions like Stargardt disease.
The U.S. Department of Education has made deep staff cuts in the offices that help schools support children with disabilities, including kids with Usher syndrome.
Both as a nurse and as a person living with Usher syndrome, Meagan wants to empower you to be the expert on your own condition. Fiercely share with your care team, your community, and your family what being well and healthy looks like for you.
New ICD-10-CM codes for Usher syndrome take effect October 1, 2025, improving diagnosis, care, insurance, and research for the USH community.
A recap of the 2025 Usher Syndrome Awareness Day, honoring our global community that educates, advocates, and supports one another. This is a day to celebrate connection, raise awareness, and fuel hope for treatments.
Nacuity Pharmaceuticals has shared exciting news about a potential new treatment for people with Usher syndrome. They tested an antioxidant tablet called NPI-001 to see if it could slow down vision loss.
The Usher Syndrome Coalition urges the continuation of funding for four State DeafBlind Projects recently notified that their support will end.
People with Usher syndrome are often talked about in terms of challenges, health problems, or things they cannot do. This chapter takes a different approach. It looks at how adults with Usher syndrome cope, stay strong, and build meaningful lives.
In this article, researchers took another look at a gene called CIB2. Years ago, this gene was thought to cause a type of Usher syndrome called USH1J. In 2012, the researchers studied a family in a rural area of Pakistan. The family had hearing loss, and reports suggested they also had vision loss. Because of this, the researchers believed that changes in the CIB2 gene caused both hearing and vision problems. However, the researchers did not examine the family’s eyes themselves and instead relied on reports from others.
jCyte published Phase I/IIa results from its first major clinical study, which tested its cell-based therapy, called jCell. This therapy uses special “retinal progenitor cells” that are placed into the eye with a small injection.
Back in October 2024, Nanoscope Therapeutics announced plans to begin a rolling FDA submission for its potential treatment MCO-010, following a positive meeting with the agency. Less than a year later, that plan is becoming reality.
First-time USH Champion shares personal experience advocating for $50 million in Usher syndrome research funding on Capitol Hill.
Learn how hearing health impacts well-being for people with Usher syndrome. Discover the importance of regular hearing tests, proper maintenance of assistive hearing equipment, and hearing health awareness improve communication, safety, and quality of life.
Summary of research updates for each Usher syndrome type at ARVO 2025.
Psychotherapist and Usher syndrome advocate Rebecca Alexander shares her deeply personal journey with diagnosis, grief, and resilience. Rebecca offers insights and tools for navigating the emotional complexity of progressive vision and hearing loss.
Usher syndrome affects both hearing and vision, and sometimes balance. Because vision loss happens slowly, children with Usher syndrome are often missed when people count how many children are deafblind. Many children may appear to see well at first, so they do not always get the help they need.
Urge your Members of Congress to protect vision loss research and newborn hearing screenings. Congress is making big funding decisions that will impact the Usher syndrome community.
A study by the National Institutes of Health (NIH) found that reserpine, an old blood pressure medication, might help protect vision in people with inherited eye diseases like retinitis pigmentosa (RP).
Therapist and disability advocate Becca Brown explores the impact of internalized ableism, the power of self-advocacy, and the importance of mental health support for those navigating Usher syndrome and other disabilities.
Scientists at Boston Children’s Hospital and Harvard Medical School are studying how the body grows and repairs itself by creating tiny “mini-organs” in the lab. These mini-organs, called organoids, are made from human stem cells. Some organoids are made to resemble parts of the inner ear, while others resemble skin.
