Usher Syndrome Blog and News

The latest USH blog posts and various news items impacting the Usher syndrome community. Join our mailing list.

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.

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. 

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.

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.

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

The FDA and National Institutes of Health (NIH) are partnering with 15 private organizations to increase the number of gene therapies for rare diseases.

The Atlantic Journal-Constitution summarizes research being done in Switzerland at Paul Scherer Institute on a protein, cyclic nucleotide-gated ion channel, in the eye.

Researchers at Newcastle University are looking into creating treatments for common inherited eye conditions.

Join us July 8-9. In order to keep everyone connected in 2022, we’re planning a hybrid format for this event. Meet your USH Family in person in Austin, Texas, or connect online.

The biopharmaceutical company, Ocugen Inc., has announced that the FDA has accepted their Investigational New Drug (IND) application to start a human clinical trial with OCU400.

Researchers at the Casey Eye Institute in Portland, OR have been studying the role that inflammation plays in the progression of inherited retinal diseases.

A recent biotechnology breakthrough is the organ-on-chip (OOC) technology.

In this study, patients with Usher syndrome were shown to have an olfactory deficit compared to the normal population.

AIVITA Biomedical Inc., a biotech company that specializes in new ways of using stem cells, recently conducted a preclinical study. Using human stem cells that they created, researchers created and tested a “total retina patch” for vision loss.

Professor Gregg Suaning has been working for more than 20 years to help restore vision. Currently, he is working on a technology similar to cochlear implants; a pair of glasses that has a camera attached to them.

The National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), 10 pharmaceutical companies, and five non-profits have partnered as the Bespoke Gene Therapy Consortium (BGTC) to help speed up the development of gene therapies for rare diseases.

Scientists have developed a type of “pellet” implant that can be injected into the eye to prevent cataracts from forming.

University of Pittsburgh School of Medicine is working on a technology to help other researchers determine what the best gene delivery system could be for their genetic treatment research.

"As an organization formed on the pillars of community and collaboration, the Usher Syndrome Coalition is thrilled to partner with CUREUsher, an alliance we're confident will grow and strengthen our global USH family. The launch of our two-fold collaborative awareness initiative will harness the energies of the USH community and the clinicians who serve them so that one day, everyone with this diagnosis can be supported by a doctor who is knowledgeable about Usher syndrome." - Krista Vasi, Executive Director

Eye drops of PNU-282987, an α7 nicotinic acetylcholine receptor agonist, were shown to support regeneration of retinal neurons in mice.

You're invited to join the Usher Syndrome Coalition in recognition of the 7th annual global Usher Syndrome Awareness Day. This special day belongs to our community and falls on Saturday, September 18th this year. 

Often, individuals who present with deafness and vision loss are assumed to have Usher syndrome (USH). This assumption is not correct.

Becca Meyers is the only Paralympic swimmer on Team USA who is both deaf and blind. This dual sensory loss has far-reaching effects on an individual’s quality of life and engagement in society. We invite the USOPC to join together with the Usher Syndrome Coalition and other organizations supporting the deafblind community to address and resolve the underlying issues resulting in the denial of Ms. Meyers’s request for essential accommodation.