Jennifer J. Lentz, Ph.D.​​​​​​ from Louisiana State University Health New Orleans provides this update on research progress to treat Usher syndrome type 1C.

Brian Forni shares how you can play an integral for the Usher Syndrome Coalition at the local, state, and federal level.

Dr. Koleilat shares an update on her team's efforts to develop the first drug therapy to treat the hearing loss associated with Usher syndrome type 1B.

Ben Shaberman of Foundation Fighting Blindness reviews cross-cutting (gene independent) alternatives currently in development that could save or restore vision to those with Usher syndrome, regardless of the underlying gene mutation causing the condition.

Bettina Kastrup Pedersen of the Institute of Vision, Hearing and Deaf Blindness in Denmark shares perspectives from a number of consultants' long-standing cooperation with children and adolescents with Usher syndrome and their networks.

Sonia Romero of Sonia Marie Nutrition shares her ten keys to healthy eating and supporting your body for your best health. This session was recorded live for families of children with Usher syndrome and the speaker was responding to their questions.

In this brief talk, professional artist Timothy Chambers shares and demonstrates what it is like for someone with Usher syndrome.

Dr. Shannon Boye shares an overview of her lab's efforts to develop a treatment for the vision loss caused by Usher syndrome type 1B.

Brian Mansfield shares how the Foundation Fighting Blindness, Blueprint Genetics, and InformedDNA have partnered to offer free genetic testing and genetic counseling for individuals with a suspected inherited retinal disease (IRD) living in the United States, including Usher syndrome.

In 2003, Diane Wonchoba and several parents successfully passed hearing aid insurance coverage legislation in the state of Minnesota. Diane shares tips for other parent advocates to do the same.

Friedrich Asmus, MD updates the Usher community of ProQR’s continued clinical progress.

In this presentation, Cindy Elden of the Usher III Initiative tells her story of living with USH3, from her diagnosis to her work seeking a treatment for Usher III.

Megan Lengel, an Ambassador and Young Adult Coordinator for the Usher Syndrome Coalition, gives an overview of the organization's existing resources. Goals for future expansions and resource development are also addressed.

David P. Corey, Ph.D. of Harvard Medical School describes his team's efforts to prevent the deafness caused by Usher syndrome type 1F by engineering a "mini-PCDH15".

Dr. Shanna Dewsnup, audiologist and parent of a young adult living with Usher syndrome, shares an overview of the newest hearing technology and accessories available today that work best for those living with Usher syndrome.

Presented by Ava's Voice: USH Moms, Carly Fredericks & Pamela Aasen, share their experience in an open discussion about their children's journey. You also hear from their teens themselves.

Rebecca Alexander is a psychotherapist who has Usher syndrome type 3A. During this live Q&A session, part of the virtual USH2020 Connections Week hosted by the Usher Syndrome Coalition, Rebecca answered questions about mental health and living with Usher syndrome.

USH Connections Week culminated with our final live session: "Ask the Researchers" Live Q&A. Moderated by Margaret Kenna, MD, MPH, research panelists include: Friedrich Asmus, MD, David P. Corey, PhD, Jennifer Lentz, PhD, Brian Mansfield, PhD, Ben Shaberman

December 10, 2019: In this USH Talk, Dr. Moa Wahlqvist summarizes the findings from the first qualitative scientific study of its kind, exploring the strategies described by 14 people with Usher syndrome type 2 seeking to remain active agents in their own lives.

March 13, 2018: In this USH Talk, Dr. Monte Westerfield presents research on animal models of Usher syndrome that shows that a specific type of cellular stress is responsible for degeneration of photoreceptors and inner ear cells. These discoveries provide strategies for preclinical testing of therapies to prolong vision in persons with Usher syndrome.

December 5, 2017: In this USH Talk, Dr. Kumar Alagramam summarizes therapies to treat two common mutations in Usher syndrome III (USH3) and demonstrates proof-of-concept using animal models of USH3.

October 3, 2017: In this USH talk, Hester van Diepen provides an overview of the Usher development program at ProQR Therapeutics as an approach for possible future treatment of USH2A-associated retinitis pigmentosa.

June 27, 2017: This presentation by Dr. Shannon Boye summarizes efforts to develop a dual AAV vector-based gene therapy for Myosin7a Usher syndrome (USH1B). The drawbacks of USH1B mouse models and a rationale for testing these vectors in a more clinically relevant species are discussed. (Also available in ASL)

May 30, 2017: This USH Talk from Dr. Hannie Kremer explains genetic testing of the USH2A gene, as conducted at the Radboud University Medical Center in Nijmegen, Netherlands.

May 2, 2017: In this USH Talk, Dr. Gema García-García shares strategies for the molecular diagnosis of Usher syndrome used at the Health Research Institute Hospital La Fe in Valencia, Spain.

May 2, 2017: Estrategias para el estudio molecular del Síndrome de Usher.

March 1, 2017: In this USH Talk, Dr. Erwin van Wijk shows that AON-based splice correction could be a promising approach for the development of a future treatment for USH2A-associated retinitis pigmentosa.

February 6, 2017: Dr. Gwen Géléoc shares exciting news on progress made towards gene therapy for USH1C, which restored hearing in deaf mice down to a whisper.

January 24, 2017: Dr. Jacque Duncan gives an overview of a clinical trial that aims to study the rate of progression of USH2A related retinal degeneration.