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Usher syndrome Family Conference, July 10, 2010

June 9, 2010

by Mark Dunning (biographical sketches by Karmen Trzupek)

Jennifer and I have been debating the difficulty in establishing and maintaining relationships and open communication between researchers, professionals, and families. The family conference in Seattle on July 10th is a great opportunity for families not only to connect with other families, but also to meet and talk with some of the leading researchers and Usher syndrome professionals. I strongly encourage you to attend if you can. Both Jennifer and I plan to be there and would love for the chance to meet our readers.

Here's some information on the presenters:

Dr. William Kimberling, PhD
University of Iowa and Boystown National Research Hospital
Dr. Kimberling is internationally known as an expert in Usher syndrome, with over 30 years of experience in the clinic and in the laboratory. Over that time, he has received many federal and private grants to study Usher syndrome and related disorders. Through these studies he and his collaborators have been responsible for the identification of four of the nine Usher genes. He currently holds a dual-professorship at Boystown National Research Hospital and the University of Iowa, where he is working with Dr. Edwin Stone to develop an inexpensive but accurate means of screening young children for Usher syndrome.

Linda Ramsdell, MS, CGC
Seattle Children's Hospital

Linda Ramsdell is a certified Genetic Counselor working in Medical Genetics at Seattle Children's Hospital. Since becoming certified in 1993, Linda has been involved with a variety of specialty genetics clinics at the University of Washington. She now works closely with Dr. Kathy Sie, director of the Childhood Communication Center, and co-director of the Pediatric Cochlear Implant Program at Seattle Children's, to provide genetic counseling, testing, and support to families with inherited forms of hearing loss. Linda also serves on the Genetic Services committee of the National Society of Genetic Counselors (NSGC.)

Peter Francis, MD, PhD
Oregon Health & Science University

Dr. Francis specializes in research and medical care of the retina and has a particular interest in ophthalmic genetics, practicing at Oregon Health & Science University. He is intimately involved in the design and execution of current and upcoming clinical treatment trials for inherited retinal and macular dystrophies, working closely with the Foundation Fighting Blindness. Dr. Francis directs a stem cell research lab at the new Biomedical Research campus at OHSU. Prior to joining OHSU, he practiced at St. Thomas' Hospital in London, and was director of undergraduate teaching at the medical school for Guy's, King's College, and St. Thomas' hospitals in London. He is also is the editor of the ophthalmology review journal "Ophthalmology International."

Jim Phillips, PhD
University of Washington

Dr. Phillips is the director of the Dizziness and Balance Center with the department of Otolaryngology at the University of Washington Medical Center, and the director of the Clinical Oculomotor Laboratory within the Division of Ophthalmology at Seattle Children's Hospital. His work bridges the gap between the research laboratory and the clinic, translating scientific theory into practical tools for assessment of patients. Dr. Phillips studies the genetics of vestibular function in mice, basic physiological mechanisms in non-human primates, the development of behavior in infants and children, and the behavioral consequences of disease and developmental disorders in patients.

Dorothy Walt
Helen Keller National Center

Dorothy Walt is a regional representative for the Helen Keller National Center, northwest region. She earned her M.A. in Rehabilitation Counseling from Gallaudet University and has worked in the field of deaf-blindness for over 15 years. After starting and managing a statewide deaf-blind program in Anchorage, Alaska, Dorothy accepted a position as a HKNC regional representative and became involved with advocating for deaf-blind people nationally and worldwide. She now lives in Seattle.

Nancy Hatfield, MS, PhD
Washington Sensory Disabilities Services

Nancy Hatfield has worked with Washington Sensory Disabilities Services since 1992 to enhance statewide capacity to meet the needs of children and young adults with sensory disabilities. She co-directs the deaf-blind project and coordinates early childhood activities, as well as functioning as administrative director of WSDS staff and grants based at Puget Sound ESD. Nancy holds a B.A. in Speech Pathology/ Audiology and a M.S. and Ph.D. in Education and Human Development. Nancy's prior work experience includes early intervention services for families with infants and toddlers who are deaf, hard of hearing, and deaf-blind. She wrote grants for and directed Project SIT-UPS (Sensory Impairment Training to Upgrade Professionals' Skills) and the Shared Reading Video Outreach Project.

Amelia Westerfield

Amelia Westerfield is a recent master's degree graduate of the University of Washington's School of Social Work. Together with her husband, she lives and works independently as a social worker, and is an ardent supporter of local outreach programs and fundraisers serving the deafblind community. She recently wrote an article for the Oregon DeafBlind Project entitled, "Thoughts on Transitioning: One DeafBlind Woman's Approach to Life."

Katie Humes

Katie Humes has an extensive background with young children with hearing loss, including children with multiple disabilities. She has a Masters in Education, with a specialty in infants & toddlers with hearing loss. In addition to her 15 years as a parent-infant specialist with families of young children in the Seattle area, Katie was executive director of Whatcom Center for Early Learning, a birth-to-three program for children with special needs, from 2001-2004. She is currently a state-wide coach with Washington Sensory Disabilities Services (WSDS), providing support for families and service providers using the SKI HI Curriculum for a range of issues relating to hearing loss.

Richard Weleber, MD, PhD
Oregon Health & Science University

Dr. Weleber is double-boarded in ophthalmology and medical genetics, and heads the division of Ophthalmic Genetics at Oregon Health & Science University. He specializes in inherited retinal and macular dystrophies. His research interests include retinitis pigmentosa and allied disorders, electrophysiology of the eye and visual system, congenital anomalies, dysmorphology, and genetic and metabolic disease of the eye and visual system. He has pioneered the development of novel measures for testing retinal disease using the electroretinogram (ERG) and visual field analyzers, and works closely with the National Eye Institute, the Foundation Fighting Blindness, and pharmaceutical companies to validation testing strategies as endpoints for clinical trials for retinal degenerations.

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