Early Diagnosis Is Critical You Are Not Alone
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Coalition Members

HearSeeHope
 
HearSeeHope is a 501(c)3 non-profit dedicated to funding Usher Syndrome research. HearSeeHope is a founding member of the Coalition for Usher Syndrome Research and has funded many Usher Syndrome projects, including the creation of this Coalition web site.
 
Boystown Hospital
 
Boys Town National Research Hospital provides nationally-oriented clinical and surgical services. Research programs focus on childhood deafness, visual impairment and related communication disorders.
 
Children's Hospital Boston
 
Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 600 scientists, including seven members of the National Academy of Sciences, twelve on-staff members of the Institute of Medicine and seven members of the Howard Hughes Medical Institute comprise Children's research community.
 
The Decibels Foundation
 
The Decibels Foundation is a 501(c)3 non-profit dedicate to helping kids with hearing loss and their families. Decibels supports parental education programs that provide families the opportunity to network with other families. The programs provide child playgroups, individual therapy, and parental education sessions. Decibels also assists families and school systems as children transition in to school by providing educational workshops and consultative services.
 
The Foundation Fighting Blindness
 
The urgent mission of the Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases.  The FFB has funded thousands of research studies at hundreds of prominent institutions worldwide, including leading-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, and pharmaceutical and nutritional therapies.  Since its inception on September 16, 1971, the Foundation has raised more than $300 million.
 
Harvard Medical School Center for Hereditary Deafness
 
The Harvard Medical School Center for Hereditary Deafness has a mission to bring researchers, clinicians and families together to better understand hereditary hearing loss. The center includes clinicians and researchers from Harvard Medical School, Children's Hospital Boston, Brigham & Women's Hospital, Massachusetts General Hospital, Massachusetts Ear & Ear Infirmary, Harvard School of Public Health and other Harvard-affiliated institutions.
 
Oregon Health & Science University Casey Eye Institute
 
Casey Eye Institute is an academic regional eye center dedicated to preventing blindness through research and to bringing advanced technology to the Pacific Northwest through continuing education of physicians. Casey educates medical students, residents, fellows, practicing ophthalmologists and other health care providers. The ophthalmology residency program is consistently rated as one of the top U.S. programs.
 
Seattle Children's Hospital
 
Ranked as one of the best children's hospitals in the country by U.S. News & World Report and Child magazines, Seattle Children's Hospital serves as the pediatric referral center for Washington, Alaska, Montana and Idaho. Founded in 1907, Children's provides excellent patient care with compassion and respect, and conducts cutting-edge pediatric research. We also serve as a respected educational resource for parents and healthcare professionals alike.
 
University of Iowa Carver Laboratory
 
Marcia Carver Nonprofit Genetic Testing Laboratory is dedicated to providing non-profit genetic testing for rare eye diseases to meet a societal need. Most of the diseases that we study are so rare that commercial tests would be unlikely to be viable for the long term. As a result, many individuals affected with these diseases and their families would have little access to molecular information were it not for Carver Laboratory.

 

The Audiological Research Centre in Örebro, Sweden

 

The Audiological Research Centre in Örebro, Sweden, is a co-operation between the Department of Audiology, the University Hospital of Örebro, Örebro University and the Swedish Institute for Disability Research. The aim is interdisciplinary clinical research in Hearing, Deafness and Hearing disorders. The centre comprises state of the art auditory research laboratories. The staff and researchers are physicians, engineers, nurses, audiologists, sociologists, psychologists and admi­nistrative personnel. In 2009, 10 senior researchers and 15 doctoral students are perfor­ming audiological research at the Audiological Research Centre.  A national data base on subjects with Usher syndrome I, II and III is located in Örebro. The research concer­ning Usher syndrome is performed in cooperation with the University of Lund (Sweden), University of Copenhagen (Denmark), Boystown National Research Hospital, Omaha Nebraska (USA) and the University of Iowa (USA).

 

The Megan Foundation

 

The Megan Foundation is a 501(c)3 non-profit based in St. Louis dedicated to funding Usher Syndrome research.