Jeffrey Bohrman

Program Director at Columbus Speech & Hearing Center

Dr. Jeffrey Bohrman was born with Usher Type 1C (German Jewish, not French Cajun). He had a strong oral upbringing despite his impaired speech. He did not learn ASL formally until he was 41. After Jeff graduated from Clarke School for the Deaf, he started ...
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Carly Fredericks Founder & President Ava’s Voice iCanConnect Program Coordinator (NJ)

Ava’s Voice

Carly Fredericks has a love for the field of deaf-blindness. She is the Founder and President of Ava’s Voice. The mission of Ava’s Voice is to empower youth with Usher syndrome and to educate families and school communities. She is also the Program Coordinator for ...
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Mark Dunning

Chairman at Usher Syndrome Coalition

Mark Dunning is the father of an 20-year-old daughter with Usher syndrome, founding member and Chairman of the Usher Syndrome Coalition, and co-founder of the Decibels Foundation. Mark is also the Global Director of Information Technology of L.E.K. Consulting.

Aniz Girach

ProQR Therapeutics, Netherlands

Aniz Girach, MD is ProQR's Chief Medical Officer. After having spent 11 years in academia, he joined the pharmaceutical industry with Eli Lilly, focusing on retinal diseases. He has in total 22 years industry experience in roles with Merck, as their Global Head of Ophthalmology, ...
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Christine Kay, MD

Vitreoretinal Associates; Gainsville, FL

Christine Kay, M.D. is the director of electrophysiology, retinal genetics, and clinical trials at Vitreoretinal Associates in Gainesville, Florida. Prior to this, she was an Assistant Professor and director of the retinal fellowship and retinal genetics service at the University of Florida. She graduated from ...
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Marly Kenna

Boston Children's Hospital

Margaret Kenna's research focuses on pediatric otology; currently, she is studying the underlying causes of sensorineural hearing loss (SNHL), the most common congenital sensory impairment. Her research includes the genetics of hearing loss, especially GJB2 (Connexin 26) and Usher syndrome; anatomic inner ear anomalies and ...
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Lanya McKittrick

Chair at Usher Syndrome Coalition

Lanya McKittrick received her Ph.D. in Special Education at the University of Northern Colorado. Her research interests include: services and supports for students who are deafblind and their families; family-professional partnerships; student-led IEP’s; and transition. Her research is rooted in her personal experience as a ...
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Wasim Raza

Walden University

Sandra Scala

The Mind, Untangled.

Sandra Scala has Usher syndrome (USH2A), and anxiety, and has been through stages of dark times in her life. She still has her moments; BUT, keeps pushing forward! She is a 39-year-old stay-at-home mom, whose focus in life is her family (three of her own, ...
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Susan Schneider

SVP Clinical Development, Ophthalmology at Eloxx Pharmaceuticals

Anne Schueler

Anne Schueler is the mother of soon to be 5 children, ages 12, 9, 7, 3, and 20 weeks gestation. She and her family live in Cincinnati, Ohio with their oldest daughter’s service dog, Beyonce. Her daughters Gianna (12) and Pia (7) were diagnosed with ...
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Dario Sorgato

Founder at NoisyVision

Dario Sorgato was born in Italy in 1978. He grew up in Padua and moved to Milan to study Design. At the age of 16 he was diagnosed with Usher syndrome. After graduation he undertook several travels, seeking new challenges and determined not to be ...
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Ryan Thomason

Department of Defense

Ryan Thomason was born and raised in Lake Stevens, Washington, a small town north of Seattle. Sports was a big part of growing up for him. Ryan loved training and competing in football, basketball and then track and field. After high school, Ryan went to ...
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Monte Westerfield

Dr. Monte Westerfield has two adult children with Usher syndrome. Monte is the Director of an Usher syndrome research laboratory and a Professor of Biology at the Institute of Neuroscience, University of Oregon.