Board of Directors

  • Lanya is the mom of four boys, two who are living with Usher syndrome. She is the co-founder of Hear See Hope Foundation and a special education researcher.

  • David is the father of a daughter with Usher syndrome type III. He is a Mediator and Disability Rights Advocate.

    David Alexander
    David Alexander

    Father of a daughter with Usher syndrome type III
    Mediator, Disability Rights Advocate

  • Kathy is the mom of three girls and one boy. Her son has USH2A. She has a background in information systems technology and is a Project Manager for a global engineering firm.

  • Tara was diagnosed in 2012 with Usher Type 2A. Tara is an attorney and happily married with two younger daughters, a dog, and a cat.

  • Nancy Corderman is the mother of four children, two of whom are living with Usher syndrome. She is the founder of the Usher Syndrome Society.

  • Dr. Margaret (Marly) Kenna is the Director of Clinical Research at Boston Children's Hospital's Department of Otolaryngology and Communication Enhancement. Her research includes the genetics of hearing loss, especially GJB2 (Connexin 26) and Usher syndrome; anatomic inner ear anomalies and vestibular function testing; and congenital cytomegalovirus infection.

  • Dr. Jennifer Lentz is an Associate Professor in Otorhinolaryngology, Ophthalmology, in Genetics in the Neuroscience Center at LSU Health New Orleans. The goals of her research are to better understand the mechanisms of Usher syndrome and to develop new therapies.

  • Steve is married with two children. His wife has Usher 2C. He is the Treasurer for multiple non-profit organizations.

  • Steven is recognized as the first black deafblind journalist. A Disney alumnus and founder of the media company Spoken Entertainment, McCoy's platform and popular podcast, “Sessions with Steven," enables him to interview guests to heighten love, humanity, and awareness. Diagnosed with Usher syndrome in 2019, Steven now tours the world as a motivational speaker, sharing his experience living with the most common genetic cause of deafblindness.

  • Adult with Usher syndrome
    Retired, Department Business Administrator and Analyst Programmer, University Mississippi Medical Center

    Danay Trest
    Danay Trest

    Adult with Usher syndrome
    Retired, Department Business Administrator and Analyst Programmer, University Mississippi Medical Center

  • Eric is a married father of four children who worked as a Product Design Scientist in the Pharmaceutical Industry before medically retiring in 2019. He has Usher syndrome and a guide dog named Cosmo.

  • Dr. Monte Westerfield is a Professor of Biology and Director of the Usher Syndrome Research Laboratory at the Institute of Neuroscience, University of Oregon.

STAFF

BOARD OF TRUSTEES

  • Retired, Staff Otolaryngologist, Boys Town National Research Hospital

    Edward S. Cohn, MD
    Edward S. Cohn, MD

    Retired, Staff Otolaryngologist, Boys Town National Research Hospital

  • In Memoriam: Director, Center for the Study and Treatment of Usher Syndrome, Boys Town National Research Hospital
    Professor, University of Iowa Carver School of Medicine

  • Research Associate, University of Oregon
    Co-Author, Usher Syndrome Blog

  • Director, Laboratory of Molecular Medicine, Partners Healthcare Personalized Medicine
    Associate Professor of Pathology, Harvard Medical School

  • Parent of a child with Usher syndrome
    Owner, Atlas Scaffolding & Equipment

    John Roy
    John Roy

    Parent of a child with Usher syndrome
    Owner, Atlas Scaffolding & Equipment