Usher Conference Call Notes
Date	Description	Type
06.07.13	Usher Researcher Call Notes - May 2013 Dr. Wadih Zein from the National Eye Institute's (NEI) Ophthalmic Genetics and Visual Function Branch discusses his work on Usher syndrome at NEI.	Meeting Notes
04.15.13	Usher Researcher Call Notes - April 2013 Dr. Heidi Rehm from the Harvard Medical School Center for Hereditary Deafness joined us to discuss her latest work on the genetics of Usher syndrome.	Meeting Notes
03.21.13	Usher Researcher Call Notes - March 2013 Dr. Eyal Margalit from the University of Nebraska Medical Center's Department of Ophthalmology and Visual Sciences joined us to discuss the Intraocular Retinal Prosthesis Project.	Meeting Notes
01.24.13	Usher Researcher Call Notes - January 2013 Dr. Margaret Kenna from Boston Children's Hospital joined us to discuss early diagnosis of Usher syndrome in children.	Meeting Notes
01.24.13	Usher Researcher Call Notes - February 2013 Ilene Miner, a licensed social worker, joined us to discuss psychosocial health and Usher syndrome.	Meeting Notes
11.16.12	Usher Researcher Call Notes - November 2012 Jennifer J. Lentz, PhD., an Assistant Professor of Otolaryngology & Biocommunications and a member of the Neuroscience Center of Excellence at Louisiana State University Health Sciences Center in New Orleans, Louisiana discusses her research on Usher 1C.	Meeting Notes
10.12.12	Usher Researcher Call Notes - October 2012 Dr. William Kimberling discusses the current state of Usher syndrome research.	Meeting Notes
09.14.12	Usher Researcher Call Notes - September 2012 Mark Dunning, Executive Director of the Coalition for Usher Syndrome Research, discusses the Coalition's current projects and call for volunteers to help.	Meeting Notes
06.19.12	Usher Researcher Call Notes - June 2012 Dr. Jennifer Phillips joined us to discuss exciting new research presented at ARVO that might impact Usher families.	Meeting Notes
06.01.12	Usher Syndrome Conference Call All are welcome to join in our monthly conference calls. The calls are the second Monday of every month at 1:00 PM Eastern Time. We do not have calls in July and August. Dial-in details are in this document.	Meeting Notes
05.15.12	Usher Research Call Notes - May 2012 Dr. Richard Weleber of the Casey Eye Institute joined our monthly conference call to discuss the ongoing clinical trial of a gene therapy treatment for Usher type 1b. This is the first clinical trial of a treatment for any type of Usher syndrome and is g	Meeting Notes
03.13.12	Usher Research Call Notes - March 2012 Demonstration of the Usher Syndrome Registry due to launch in 7-10 days as well as an update on the Usher Syndrome Family Conference July 7th in St. Louis.	Meeting Notes
02.16.12	Usher Researcher Call Notes - February 2012 Preparations for the launch of the Usher Syndrome Registy. The Usher Syndrome Registry is in the final testing phase. We need to let people know about it. How should that be done?	Meeting Notes
01.12.12	Usher Researcher Call Notes - January 2012 How can we gain more government funding for Usher syndrome research?	Meeting Notes
12.15.11	Usher Researcher Call Notes - December 2011 Dr. Margaret Kenna from Children’s Hospital in Boston discusses family interaction and the ethics of genetic testing.	Meeting Notes
12.06.11	Usher Researcher Call Notes - November 2011 Dr. Heidi Rehm from the Harvard Medical School Center for Hereditary Deafness discussed how genetic testing works and what the future holds for genetic testing	Meeting Notes
10.17.11	Usher Researcher Call Notes - October 2011 Honore Weiner, Educational Director for the Decibels Foundation, and Tracy Evans Luiselli, Director for the New England Center Deafblind Project, discuss Accomodations in the Classroom for Kids with Usher.	Meeting Notes
06.14.11	Usher Researcher Call Notes - June 2011 Ilene Miner, a licensed clinical social worker in New York and California who has been working with deaf, hard of hearing, and deafblind people for 30 years, talks about what to tell a child about Usher syndrome and when.	Meeting Notes
03.16.11	Usher Researcher Call Notes - March 2011 What do we know about the rate of vision loss in Usher syndrome?	Meeting Notes
03.16.11	Usher Researcher Call Notes - May 2011 Dr. Jennifer Phillips discuss the latest research presented at ARVO.	Meeting Notes
01.12.11	Usher Researcher Call Notes - January 2011 Establishing Centers of Excellence	Meeting Notes
01.12.11	Usher Researcher Call Notes - February 2011 When to tell your child he or she has Usher syndrome and what to say.	Meeting Notes
11.11.10	Usher Researcher Call Notes - November 2010 Dr. Arelene Drack discusses her work with various potential therapeutic interventions, including TUDCA.	Meeting Notes
10.13.10	Usher Researcher Call Notes - October 2010 Discussing the need for an Usher syndrome registry.	Meeting Notes
09.21.10	Usher Researcher Call Notes - February 2010 Dr. Raymond Iezzi from the Mayo Clinic discusses his research on treatments for retinitis pigmentosa and Usher syndrome.	Meeting Notes