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Wednesday, June 8, 2011

Third Annual Usher Syndrome Family Conference

by Mark Dunning

The Coalition for Usher Syndrome Research in conjunction with the Usher Syndrome Foundation and the Decibels Foundation will be holding a third annual Usher Syndrome Family Conference this July 8th in at the Host Hotel in Sturbridge Massachusetts. The conference is an excellent opportunity to meet other Usher families and to network with some of the leading Usher syndrome researchers. I strongly encourage you attend if you can. I will be there and look forward to meeting some of you then.

You can register for the conference here.

Here’s some more about the speakers:

William J. Kimberling, Ph.D., is a senior scientist at the Boys Town National Research Hospital in Omaha, Nebraska and a professor of Ophthalmology at the University of Iowa, Carver School of Medicine. Dr. Kimberling has published more than 250 scholarly papers on a variety of topics from population cytogenetics to kidney disease. He has recently focused his studies on the genetics of sensory loss, specifically on combined vision and hearing loss, including Usher syndrome. His laboratory has been responsible for the identification and characterization of several genes that cause Usher syndrome.

Margaret Kenna, MD, focuses her research 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 vestibular function testing; and congenital cytomegalovirus infection. Dr. Kenna received her MD degree from Boston University School of Medicine. She completed an internship and residency in Otolaryngology-Head and Neck Surgery at the University Hospital of Arkansas and a fellowship at in Pediatric Otolaryngology at the Children's Hospital of Pittsburgh. She received a MPH in Clinical Effectiveness from the Harvard School of Public Health in 2005.

Heidi Rehm, Ph.D., is a board-certified clinical molecular geneticist, Director of the Laboratory for Molecular Medicine at the Partners Center for Personalized Genetic Medicine and Assistant Professor of Pathology at Harvard Medical School. She studies genetic hearing loss and Usher syndrome and has developed novel approaches to molecular diagnostic testing including a recent test called the OtoChip for identifying a genetic cause of hearing loss or Usher syndrome (http://pcpgm.partners.org/lmm/tests/hearing-loss/OtoChip). Dr. Rehm has also created many resources to help educate physicians and families about the genetic causes of hearing loss.

Mark Dunning is the father of a daughter with Usher syndrome type 1b. He is also a founding member of the Coalition for Usher Syndrome Research, the President and co-founder of the Decibels Foundation, a member of the Board of Directors for both the Hear See Hope Foundation and the New England Regional Genetic Group, and the IT Director for L.E.K. Consulting, a global strategic consulting firm.

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