The Decibels Foundation                  Hear See Hope LogoCoalition for Usher Syndrome Research


Krista Scheall 
Coalition for Usher Syndrome Research 
(617) 784-8818 


Saturday July 13, 2013 at 8:00 AM 
Saturday July 13, 2013 at 5:00 PM 

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Embassy Suites Hotel 
319 SW Pine Street
Portland, OR 97204-2726

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Usher Syndrome Family Conference

Saturday, July 13, 2013

The Coalition for Usher Syndrome Research, the Decibels Foundation and Hear See Hope are proud to sponsor the fifth family focused Usher syndrome conference.  Come join us to learn the latest on the causes, management, and treatments of Usher syndrome.

About Usher Syndrome
Usher syndrome is a genetic disorder causing various degrees of congenital hearing loss and deafness, a progressive debilitating vision disorder known as retinitis pigmentosa (RP), and in many cases, vestibular dysfunction.  Usher syndrome is the leading cause of deaf-blindness in the western world. Hearing aids and cochlear implants are often successful in hearing loss. To date, no proven therapies exist for RP. This presentation offers talks that emphasize both research and living with Usher syndrome.
Intended Audience
Families of children and adults with Usher syndrome, ophthalmologists, otolaryngologists, geneticists, genetic counselors, teachers of deaf-blind, and service providers. 
Program Objectives
Participants will:
1. Learn about current research and therapies for Usher syndrome.
2. Understand and navigate current and upcoming clinical treatment trials.
3. Network with other families and professional regarding Usher syndrome.
4. Learn about research and treatments for Usher syndrome.
5. Identify strategies for living with Usher syndrome.
Among the speakers at the conference will be:
The Coalition for Usher Syndrome Research, Chairman; Parent of a child with Usher syndrome
Mark Pennesi, MD, PhD
Oregon Health and Science University
Assistant Professor, Ophthalmology
James O. Phillips, PhD
Seattle Children's Hospital
Center for Integrative Brain Research
Jennifer Phillips, Ph.D.
University of Oregon
Research Associate, Westerfield Lab
Co-Author - Usher Syndrome Blog
Kathleen C Y Sie, MD
Seattle Children's Hospital
Director, Childhood Communication Center; Co-Director, Cochlear Implant Program
Karmen Trzupek
Genetic Counselor  
Richard G. Weleber, M.D. 
Oregon Health and Science University
Professor, Director, Oregon Retinal Degeneration Center; Director, Visual Diagnostic Function Service
REMINDER: All special requests (interpreters/SSPs, childcare, etc) must be received no later than WEDNESDAY, JUNE 5th. Requests can be made via the registration link below.
Where to Stay
Embassy Suites Hotel - Reservation Information
Group rates under the reference group code "HearSeeHope Foundation" are available at Embassy Suites Hotel in downtown Portland, $179 per night.  

To book group rates by phone: 

Simply call 1-800-643-7892.  Indicate that you are calling to make a reservation at the Embassy Suites Portland-Downtown.  Reference group code HEA or Hear/See/Hope Foundation in order to receive the group rate.You will be asked to provide a credit card to guarantee this reservation.

For additional questions, contact Krista Scheall at or 617.784.8818.
Cost: $25 for an individual, $50 for a family (includes lunch)