Monthly USH Presentations

The presentation delivered by Dr. David Saperstein on the "Usher III Initiative - Current Research and Objectives." Dr. Saperstein shares the Usher III Initiative's latest updates on treatments under development for Usher syndrome type 3.

The presentation delivered by Drs. Hannie Kremer and Erwin Van Wijk of Radboud University Medical Center in the Netherlands: "Exon-skipping as a therapeutic approach for USH2A patients"

The presentation delivered by Mark Dunning, Chairman of the Usher Syndrome Coalition, on the state and value of the International Usher Syndrome Registry.

The presentation delivered by Dr. Lisa Olmos on her work with the Argus II Retinal Prosthesis System.

The presentation delivered by Rhys Filmer about OrCam, a portable device designed to assist the visually impaired.

The presentation delivered by Elvira Belt sharing her experience with creating a Coalition sister organization in the Netherlands, Stichting MUS.

The presentation delivered by Mark Dunning on Why You Should Attend the International Symposium on Usher Syndrome, July 10-12, 2014 in Boston.

The presentation delivered by Dr. Samar Mohanty, Biophysics and Physiology Group, University of Texas-Arlington. Dr. Mohanty presents on "Optical Control for Vision Restoration."

The presentation delivered by Moa Wahlqvist, doctoral student at the Örebro University. Wahlqvist presents on "Persons with Usher Syndrome, Some Aspects of Health.

The presentation delivered by Dr. William Hauswirth, Department of Opthalmology, University of Florida. Dr. Hauswirth presents on "Developing a Gene Therapy for Usher 1B"

The presentation delivered by Dr. Jacque Duncan, UCSF. Dr. Duncan presents on "Adaptive Optics Scanning Laser Ophthalmoscopy: a new tool to monitor cones during retinal degeneration."

The presentation delivered by Dr. David Williams, Jules Stein Eye Institute, University of California, Los Angeles. Dr. Williams presents on "Usher 1B in the Retina: Basic Science and Gene Therapy."

Mark Dunning, Chairman of the Coalition for Usher Syndrome Research, discusses the efforts of the Coalition and how you can get involved.

The presentation delivered by Dr. Eric Pierce, Director of the Ocular Genomics Institute at the Massachusetts Eye and Ear Infirmary. Dr. Pierce speaks about his latest work on Usher syndrome.

The presentation delivered by Dr. Wadih Zein from the National Eye Institute at the National Institutes of Health. Dr. Zein discusses the National Eye Institute protocol 05EI 0096, dedicated to the study of Usher syndrome, natural history and molecular genetics.

The presentation delivered by Dr. Heidi Rehm from the Harvard Medical School Center for Hereditary Deafness on our monthly researcher call in April 2013.

Dr. Eyal Margalit describe a personal journey that started about 14 years ago at Johns Hopkins where the first retinal prosthesis was developed.

Dr. Eyal Margalit describes a personal journey that started about 14 years ago at Johns Hopkins where the first retinal prosthesis was developed.

The presentation delivered by Ilene Miner, licensed social worker, during our monthly researcher conference call in February 2013. Ilene Miner presents on the "Psychosocial Impact of Usher Syndrome: Adults and the Family."

The presentation delivered by Dr. Margaret Kenna of Boston Children's Hospital during our monthly researcher conference call in January 2013.

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.

Allelic hierarchy of CDH23 mutations causing non-syndromic deafness DFNB12 or Usher syndrome USH1D in compound heterozygotes.

Honore Weiner and Tracy Evans Luiselli present on Accommodations and Strategies for Children with Hearing loss.

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.

Dr. Jennifer Phillips' discusses the latest research presented at ARVO.

What do we know about the rate of vision loss in Usher syndrome?

When to tell your child they have Usher syndrome and what to say.

Establishing Centers of Excellence

Dr. Arlene Drack discusses her work with various potential therapeutic interventions, including TUDCA.

Discussing the need for an Usher syndrome registry.

We hold an open conference call for researchers and families.  The main topic of discussion for this particular meeting was "Is the hearing loss associated with Usher syndrome progressive?"

Summary discussion of the International Symposium of Usher Syndrome and Related Diseases.

We hold an open conference call for researchers and families. The main topic of discussion for this particular meeting was Steven Rose from the Foundation Fighting Blindness discusses UshStat, a potential genetic therapy under development for Usher type 1b.

We hold an open conference call for researchers and families.  The main topic of discussion for this particular meeting was  Dr. Raymond Iezzi from the Mayo Clinic discusses and his research on treatments for retinitis pigmentosa and Usher syndrome. 

What should families be considering when they are approached to participate in a clinical trial? How do families know what science to trust? What should we be doing to ensure that families feel confident when participating?