Usher Syndrome Blog and News

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

Take action NOW to let your members of Congress know you're counting on them to reject these cuts and to prioritize Usher syndrome research funding.

Mark Dunning does the Usher Dance Challenge #usher4ushersyndrome.

Written Testimony of Stacey Breshears of Claremore, Oklahoma Labor, prepared for the Health and Human Services, Education, and Related Agencies Subcommittee of the House Committee on Appropriations.

One of these studies in Pennesi's trials is on the UshStat gene therapy trial for Usher syndrome Type 1B (MYO7A). More information on that study in the link below:
http://www.ohsu.edu/xd/health/services/casey-eye/clinical-services/specialty-services/genetics/subretinally-injected-ushstat.cfm

"Dr. Imanishi is being recognized for his remarkable contributions to the field of vision science and the significant impact of his research" -Alan R. Morse, JD, PhD, President and CEO of Lighthouse Guild.

Kate's call for sunsets is for all of us.

Andrea Oza, Genetic Counselor at the Laboratory for Molecular Medicine, shares how new advances in genetic testing mean that children and adults with Usher syndrome are being diagnosed at an earlier age than ever before.

Members of the USH community can participate in the Walk4Hearing in support of the Usher Syndrome Coalition. Here are the dates and locations for 2017 walks.

The latest news from the Usher Syndrome Coalition: Register for the 9th Annual USH Connections Conference, watch new USH Talks and more!

An overview of five technological products that can help the visually impaired.

The prestigious Institute of Ocular Microsurgery in Barcelona implanted the first patient in Spain with IRIS® II, a bionic vision system equipped with a bio-inspired camera and a 150-electrode epi-retinal implant that is designed to be explantable.

On January 29, 1929, The Seeing Eye, Inc., an organization that trains guide dogs for their blind companions, was founded. Guide dogs help to increase the independence and give back freedom to people who are blind. See more about the beginning of the guide dog movement in the United States from CBS News “Sunday Morning”.

The FDA has granted GenSight’s developing drug, GS030, Orphan Drug Disease Designation for the treatment of retinitis pigmentosa.

Press Release: (Columbia, MD) - The Foundation Fighting Blindness Clinical Research Institute (FFB-CRI) has announced an investment of up to $7.5 million to advance a promising, emerging drug treatment for retinitis pigmentosa (RP) into and through a Phase II clinical trial. Read More...

Children with Usher syndrome will be the major beneficiaries of research on Usher syndrome. But where are these children? Nancy O'Donnell, Director of the USH Trust, ponders this question in an upcoming webinar hosted by the National Center on Deaf-Blindness.

Family physician, Annmaree Yee, shares what it was like coming out of the closet with Usher syndrome.

This book is a unique collection of 27 powerful stories by individuals who are experiencing or witnessing the challenges of losing not one, but two senses: hearing and sight.

Arts for USH (formerly Kidz b Kidz/KbK) and the Corderman family are bringing awareness of Usher syndrome to the Needham community.

So here we are, a group of diverse people, angry, frustrated, worried, and shocked. Yet, despite all of that, we here in the Usher Syndrome Community have NEVER been more united.

Mark Dunning describes how the one thing he did right as a parent is all the stuff he did wrong. He failed. Often miserably.

Today, we are joining forces with patient organizations across the nation to call on Congress to pass the 21st Century Cures Act.

The Usher Syndrome Coalition is posting this on behalf of the University of Alabama at Birmingham’s (UAB) Genetic Counseling Training Program:

UAB student Caitlin Wright is currently recruiting parents for a study examining the psychosocial impact on parents who have children diagnosed with Usher syndrome. With this study, they hope to compare parent experiences for those whose children received a diagnosis at a young age to those who received a diagnosis at a later age. Participation involves a 30 minute interview in English (by phone or in person).

Usher syndrome has brought Kate to a crossroad, but she is determined to choose the right path.

Dr. Sahel plans to try to restore sight using several breakthrough treatments he helped pioneer at the Vision Institute, a research center he founded in Paris.

Good news! There are a LOT of potential treatments coming for people with Usher syndrome.

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