Population Genetic Studies of Usher Syndrome

Pilot Project of Population Genetic Studies of Usher Syndrome (funded January 2006)

Grant Summary:
The research is being conducted at the Oregon School of the Deaf in Salem, Oregon by Dr. William Kimberling from Boystown University. The goal of this study is to determine the frequencies of known Usher syndrome subtypes and their mutations in a deaf school population and in students with varied hearing losses in special education classes. This project is nearing completion and we received a synopsis of the study from the researchers at the First Annual Usher Syndrome Symposium in Omaha, Nebraska in October 2006.Ultimately, this information is important for many reasons, including increasing awareness of Usher syndrome, improving genetic testing strategies, providing earlier diagnosis, and identifying individuals as potential treatment candidates for future clinical trials. There is an opportunity that if the pilot project is successful, the National Institute of Health will award a 2.5 million dollar grant for the full screening project. This type of research gives us great hope for a cure.

More Hope than Ever!

Breaking research news – Gene Therapy provides vision to nearly blind young adults” Three young adults with virtually no vision can now read several lines on an eye chart and see better in dimly lit settings thanks to an innovative gene therapy aiming to reverse blindness in a severe form of retinitis pigmentosa known as Leber congenital amaurosis or LCA. One person was even able to better navigate an obstacle course several weeks after receiving the therapy.

The three individuals are participating in a Phase I clinical trial at The Children’s Hospital of Philadelphia.

This is an incredible milestone in curing blindness, and this advancement will help pave the way for the development of gene therapies to treat and cure a variety of retinal diseases including Usher syndrome.

Doctors working on Usher syndrome research are working to extend this incredible breakthrough to Usher syndrome. There is great hope that clinical trials for similar gene therapy for Usher syndrome is right around the corner. Future funding is needed for this important research to continue.

Hear See Hope Foundation

[youtube]http://www.youtube.com/watch?v=tei05U_lWUw&feature=plcp[/youtube]

The idea to start the Hear See Hope foundation started in August 2004 when our oldest son, Conner (then 5) was diagnosed with Usher syndrome Type 1. We immediately began doing research on Usher syndrome and all eye degenerative diseases. In this we found great hope that we could make a difference and that with funds there will be a cure for Usher syndrome in Conner’s lifetime. We discovered many very helpful and knowledgeable doctors and researchers that are doing all they can to find a cure for Usher syndrome.

We are a 501(c)3 not for profit organization in search of funds to sustain the fight against Usher syndrome. Please help us make a difference by supporting us in our fundraising efforts for preventing, treating and curing Usher syndrome.

Thank you,
Todd and Lane McKittrick
Founders

There Will Be A Day


There have been significant breakthroughs in Usher syndrome research in the last few years and there is more hope than ever that a cure is in sight.We are a 501(c)3 not for profit organization in search of funds to sustain the fight against Usher syndrome. Please help us make a difference by supporting us in our fundraising efforts for preventing, treating and curing Usher syndrome.