23 episodes

Delivering the latest in research developments and community stories impacting the Usher syndrome community.

USH Talks Usher Syndrome Coalition

    • Science
    • 3.5 • 2 Ratings

Delivering the latest in research developments and community stories impacting the Usher syndrome community.

    • video
    iCanConnect: the National Deaf-Blind Equipment Distribution Program, Marcia Brooks

    iCanConnect: the National Deaf-Blind Equipment Distribution Program, Marcia Brooks

    In this USH Talk, Marcia Brooks shares an overview of iCanConnect, the National Deaf-Blind Equipment Distribution Program. iCanConnect provides free equipment and training to people with both significant hearing and vision loss who meet federal disability and income eligibility guidelines. iCanConnect is a national program with local contacts.

    Speaker Bio: Marcia Brooks directs Perkins School for the Blind’s implementation of the Federal Communications Commission (FCC)’s iCanConnect/the National Deaf-Blind Equipment Distribution Program in 22 states/U.S. territories. She also directs the program’s national outreach, and Perkins’ provision of services to over a dozen additional state iCanConnect programs. Previously, Marcia worked at the WGBH National Center for Accessible Media (NCAM) on federally funded research grants to improve universal access to media for people with disabilities, and earlier held management positions at the Public Broadcasting Service (PBS). Marcia’s advocacy for solutions for people with disabilities includes service on the FCC’s Disability Advisory Committee; Communications Security, Reliability and Interoperability Council; and the Commercial Mobile Service Alert Advisory Committee. She also served on the Univ. of California/Berkeley School of Public Health’s national advisory board for its CDC-funded Preparedness & Emergency Response Research Center.

    • 14 min
    • video
    Life Strategies and Facilitating Factors-Usher Syndrome Type 2A, Moa Wahlqvist, PhD

    Life Strategies and Facilitating Factors-Usher Syndrome Type 2A, Moa Wahlqvist, PhD

    How do you cope with living with Usher syndrome? What strategies do you use to overcome challenges? In the first scientific study of its kind, these questions and more were explored in group interviews with 14 people with Usher syndrome type 2, who described their strategies to remain active agents in their own lives.

    In this USH Talk, Moa Wahlqvist summarizes the findings from this qualitative study.

    Speaker Bio: Moa Wahlqvist has a Ph.D. in disability science and works as a researcher with special interest in health and wellbeing for people with deafblindness, at the Audiological Research center, University hospital in Örebro and is affiliated to the Swedish Institute for Disability Research, Örebro University. She also holds a position as coordinator at the Swedish National Resource Center for Deafblindness and has a professional background within social work.

    • 25 min
    • video
    Livsstrategier och underlättande faktorer: Ushers syndrom typ 2a, Moa Wahlqvist, PhD (SE)

    Livsstrategier och underlättande faktorer: Ushers syndrom typ 2a, Moa Wahlqvist, PhD (SE)

    How do you cope with living with Usher syndrome? What strategies do you use to overcome challenges? In the first scientific study of its kind, these questions and more were explored in group interviews with 14 people with Usher syndrome type 2, who described their strategies to remain active agents in their own lives.

    In this USH Talk, Moa Wahlqvist summarizes the findings from this qualitative study.

    Speaker Bio: Moa Wahlqvist has a Ph.D. in disability science and works as a researcher with special interest in health and wellbeing for people with deafblindness, at the Audiological Research center, University hospital in Örebro and is affiliated to the Swedish Institute for Disability Research, Örebro University. She also holds a position as coordinator at the Swedish National Resource Center for Deafblindness and has a professional background within social work.

    • 25 min
    • video
    Be My Eyes, Hans Jørgen Wiberg

    Be My Eyes, Hans Jørgen Wiberg

    In this USH Talk, Hans Jørgen Wiberg, inventor and founder of Be My Eyes describes the app made up of a global community that connects people who are blind or have low vision with sighted volunteers from around the world through a live video call. Be My Eyes is accessible in more than 150 countries worldwide and in over 180 languages. The app is free and available for both iOS and Android.

    • 24 min
    • video
    Therapies to Prevent Vision Loss in Usher Syndrome, Monte Westerfield, PhD

    Therapies to Prevent Vision Loss in Usher Syndrome, Monte Westerfield, PhD

    In this USH Talk, Dr. Monte Westerfield presents research on animal models of Usher syndrome, which 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.
    Speaker Bio: Dr. Monte Westerfield is a professor in the Institute of Neuroscience, Department of Biology at the University of Oregon in Eugene, OR. The laboratory studies Usher syndrome using animal genetic models. Dr. Westerfield received the AB degree from Princeton University, PhD from Duke University, and postdoctoral training at the Max-Planck-Institute in Munich, Germany and at Harvard Medical School.

    • 14 min
    • video
    Small Molecule and Gene Therapy Approaches to Mitigate Hearing Loss in Usher Syndrome III, Kumar Alagramam, PhD

    Small Molecule and Gene Therapy Approaches to Mitigate Hearing Loss in Usher Syndrome III, Kumar Alagramam, PhD

    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.

    Speaker Bio: Dr. Kumar N. Alagramam earned his Masters in Biotechnology and PhD in Cell and Molecular Biology from the University of Tennessee at Knoxville. He received postdoctoral training in mammalian genetics at the Oak Ridge National Laboratory, Oak Ridge, Tennessee, and Case Western Reserve University. The long-term goal of his lab is to understand the genetic basis of hearing and deafness. He has focused on ear dysfunction associated with Usher syndrome for the past 15 years. The current focus of his lab is on Usher syndrome type III (USH3). He developed various animal models to understand the etiology and develop therapies for USH3.

    • 26 min

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