Usher Syndrome Blog and News

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

Katharine Rose blogs about how the essence of life seems to always come down to the small and simple things, to the things we often don’t think about, the things we take for granted, the things we forget are gifted to us as human beings: our ability to see and hear, taste and smell, walk and breathe.

I'm grateful to have had so many decades of my life completely unaware of Usher syndrome. But now that I know that I have it, I think often about how Usher syndrome isn't something that everyone knows about.

The primary purpose of the Own the Equinox campaign is to raise awareness about Usher syndrome. The second purpose of Own the Equinox is to raise funds for the Usher Syndrome Coalition.

Usher Syndrome Society, in collaboration with the Usher Syndrome Coalition, is Owning the Equinox and taking New York City by a storm by bringing awareness to Usher syndrome (USH). Check out Usher Syndrome Society's Outdoor Awareness Exhibit in Washington Square Park on September 12th!

Usher Syndrome Awareness Day and the Own the Equinox campaign are first about raising awareness for Usher syndrome. By building a community and gaining global recognition for Usher syndrome we move closer to a cure.

A plea to the Usher syndrome community: do not rely on testimonials and press releases to influence your medical treatment decisions.

Danay Trest submitted a proclamation request to Mississippi Governor Phil Bryant, who recognized September 17, 2016 as Usher Syndrome Awareness Day. Now let's make this happen in YOUR state.

The Usher Syndrome Coalition is pleased to announce that the USH Trust registry is now available in German. | NEU! NEU! NEU!: Das Usher Syndrom Register in deutscher Sprache! Wir freuen uns mitzuteilen, dass das Usher Register “USH Trust” ab sofort in deutscher Sprache verfügbar ist.

The conference transcript and presentation slides from the annual Usher Syndrome (USH) Connections Conference are now available!

Approved by the U.S. Food and Drug Administration in June, Cochlear’s Nucleus 7 Sound Processor can now stream sound directly from a compatible iPhone, iPad or iPod touch to the sound processor.

Nikolas L. Jorstad, Matthew S. Wilken, William N. Grimes, Stefanie G. Wohl, Leah S. VandenBosch, Takeshi Yoshimatsu, Rachel O. Wong, Fred Rieke, & Thomas A. Reh

NEI-funded researchers use a clue from zebrafish to discover the cues that reprogram Müller glia into retinal neurons.

Learn more about having your portrait taken and your story told to give a face and voice to Usher syndrome through photojournalism and art.

In this USH Talk, Dr. Shannon Boye summarizes efforts to develop a dual AAV vector-based gene therapy for Myosin7a Usher syndrome (USH1B). The drawbacks of USH1B mouse models and a rationale for testing these vectors in a more clinically relevant species are discussed.

Sarath Vijayakumar Frederic F. Depreux Francine M. Jodelka Jennifer J. Lentz Frank Rigo Timothy A. Jones Michelle L. Hastings.

These findings provide the first direct evidence of an effective treatment of peripheral vestibular function in a mouse model of USH1C and reveal the potential for using antisense technology to treat vestibular dysfunction.

If you’ve followed any of my involvement with the Usher community over the years, from blog posts to ARVO updates to speaking at our family conferences and making dorky USH Talk videos, it should come as no surprise to you that I’m a big proponent of science communication and outreach.

Challenge friends and family to create a short video dancing to an Usher song in hopes of getting Usher the singer to perform a benefit concert to raise awareness and funds to find treatments and a cure for Usher syndrome.

In this USH Talk, Dr. Hannie Kremer explains genetic testing of the USH2A gene, as conducted at the Radboud University Medical Center in Nijmegen, Netherlands.

Students with Usher syndrome at Gallaudet University are now able to benefit from a scholarship fund established in 2015 in honor of Linda Annala, '70, an influential leader in the deaf-blind community.

Scientists at the Boston Children’s Hospital, Massachusetts Eye and Ear and Harvard Medical School have spent several years refining a technique to repair one of the common genetic disorders that cause deafness, offering hope to millions. The genetic disorder they repaired is Usher syndrome.

Jennifer Phillips, Ph.D. highlights the importance of forging "connections with people who have expertise in different areas" of Usher syndrome.

Jennifer Phillips, Ph.D." on defining “Failure”: Disclosing when things don’t work and understanding WHY is a really important, though often overlooked realm of research. Here are a couple of USH1 research stories from today’s presentations that illustrate that point.

Jennifer Phillips, Ph.D.: Several of the talks on Day 3 at ARVO 2017 delved into the biology of what, specifically, causes photoreceptor cells to die in retinitis pigmentosa patients.

Jennifer Phillips, Ph.D. recaps ARVO 2017 Day 2 with highlights on Usher syndrome type 2A research from Erwin van Wijk and colleagues at Radboud University Medical Center in the Netherlands and RP research by Neena Haider and her team at Massachusetts Eye and Ear.

Jennifer Phillips, Ph.D. shares highlights of Usher syndrome research from ARVO 2017.

If you tell your story, if you share your dream, if you reach out for help, you might just be surprised who will reach back out to help and tell their story, and share their dream, to you.

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