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RI USH SIG – Special Interest Group for Usher Syndrome at Retina International: Update on events & resource file on USH subtypes, genetic testing & USH genes
Dorie's mother, Laurie Shapiro, talks about her journey as an Usher 1F parent.
Dorie Shapiro talks about living and coping with Usher 1F. Read her story.
Jaime Recht, who has Usher 1F, ran both the Berlin and New York marathons and raised $2000 for Usher 1F research with both races. Read about Jaime's experiences in Berlin and New York.
Little Ebba's story as told by her parents, who are desperate to save her from a life of fading vision
David Corey and his colleagues at Harvard Medical School are trying to develop gene therapy methods to treat the deafness and blindness of Usher 1F.
Read about the Chaikof family and their efforts to bring about a cure for Usher 1F.
In 2013, after learning that the lack of an animal model was hindering research for a cure for Usher 1F, Usher 1F Collaborative was founded. Fast forward six years. We now have our two animal models, a zebrafish and a mouse. We just held our second Usher 1F researchers meeting in Vancouver, Canada. The room was an exciting sight, filled with nine researchers, two pharmaceutical company representatives, and seven parents. Seven researchers updated us on their work toward multiple paths to an effective treatment. Now that we have our animal models, the presentations focused on treatments in development and on collaborations to test these treatments on our animal models. We have done the background work, and now we are ready for the exciting part.
Read more about our progress and plans.
Our second Usher 1F researchers meeting was an exciting event. On May 2, 2019, nine researchers, two pharmaceutical company representatives, and seven parents gathered to hear updates on research for a cure for the vision loss of Usher 1F. Read about the highlights of our meeting.
Toward a therapy for deafness and blindness in Usher syndrome
Two HMS neurobiologists studying the origins of deafness—Corey and Artur Indzhykulian, HMS assistant professor of otolaryngology at Massachusetts Eye and Ear—are joining forces with Botond Roska, an expert on retinal biology and eye disease at the Institute of Molecular and Clinical Ophthalmology in Basel, Switzerland, to develop treatments for a form of Usher syndrome.
Corey and Indzhykulian’s work will focus on a particularly severe form of the disease, known as Usher syndrome type IF.
When we began Usher 1F Collaborative in December 2013, we had $2000 in the bank and one researcher who had Usher 1F as a future initiative. Our initial goal was the development of an animal model on which to test potential new treatments. Five years later, we now have two animal models a zebrafish and a mouse, both of which share all three human Usher 1F traits, deafness, poor balance, and progressive vision loss, and six research groups actively working on a cure.
David Corey, PhD., is the Bertarelli Professor of Translational Medical Science, Department of Neurobiology, Harvard Medical School. He has previously studied the Usher 1F gene and has now taken on developing gene therapy for the vision loss of Usher 1F.
“Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.” ~Harriet Tubman We have succeeded, in […]
David R. Cox Scholarship for Rare Compassion This is a terrific opportunity to educate up and coming physicians about Usher 1F and to interest more researchers in helping us find a cure. If you have […]
By Livia Carvalho, Ph.D. The road towards testing gene therapy treatment strategies for Usher 1F has recently been joined by a new collaborative effort between research labs in the US and Australia. The labs of […]
During 2017, we doubled our number of funded research labs, adding two new researchers, Zubair Ahmed, Ph.D., at the University of Maryland, and Livia Carvalho, Ph.D., at the University of Western Australia. Drs. Ahmed and […]
By Zubair Ahmed, Ph.D. Zubair Ahmed, Ph.D., has been researching Usher 1F for many years. He was a post doctoral student and part of the team at the NIH that, in 2002, discovered the most […]
This fall, 400 riders in 13 spin studios around the United States cycled for a cure for Usher 1F. Spearheaded by Jared Root, father to Zachary who has Usher 1F, and his two friends and […]
Dorie Shapiro has Usher 1F, and her family is working to help find a cure. Please join the Shapiro family for the second annual Touchdown for Sight on December 17, 2017, beginning at 11 AM. […]
The following article appeared in Rye Brook’s Hamlet Hub. Click here to see the original story. One of the best things about being an editor is the ability to share knowledge and educate the public […]
Rachel Chaikof and Usher 1F Collaborative are featured in Moment Magazine’s September/October 2017 issue: The Road to Discovery
In the summer of 2012, at an Usher Syndrome Coalition conference, the Chief Research Officer of Foundation Fighting Blindness, Dr. Stephen Rose, spoke, providing an update on the latest Usher Syndrome research. He mentioned progress […]