Канал: Usher Syndrome Coalition

USH2024 Foresight Award

USH2024 Foresight Award

Living with Usher Syndrome - Panel Discussion

Living with Usher Syndrome - Panel Discussion

Clinical Trials: Perspective from Participants

Clinical Trials: Perspective from Participants

Addressing the Mental Health Needs of the Usher Community: Step 1 and Beyond

Addressing the Mental Health Needs of the Usher Community: Step 1 and Beyond

USH DCP: Community-Driven Data Science

USH DCP: Community-Driven Data Science

Genetic Testing in Usher Syndrome

Genetic Testing in Usher Syndrome

Updates on Hearing Assistive Technology From a DeafBlind Audiologist

Updates on Hearing Assistive Technology From a DeafBlind Audiologist

Low Vision Rehabilitation and Resources

Low Vision Rehabilitation and Resources

USH2024 Research Panel Q&A

USH2024 Research Panel Q&A

More than meets the eye: Current and future applications of stem cell technology in Usher syndrome

More than meets the eye: Current and future applications of stem cell technology in Usher syndrome

Clinical Trials: Options, Decisions, and Expectations

Clinical Trials: Options, Decisions, and Expectations

jCell® Retinal Progenitor Cells (RPC) Restoring Vision in Patients with Blinding Diseases

jCell® Retinal Progenitor Cells (RPC) Restoring Vision in Patients with Blinding Diseases

NAC Attack Clinical Trial for RP

NAC Attack Clinical Trial for RP

Progress and Promise of Usher Syndrome Society Sponsored Research

Progress and Promise of Usher Syndrome Society Sponsored Research

Atypical Usher Syndrome and Usher Syndrome type 4: Do they really exist?

Atypical Usher Syndrome and Usher Syndrome type 4: Do they really exist?

Usher 101: Realities, Resources, and Research

Usher 101: Realities, Resources, and Research

USH2024 Diamond Sponsor Presentation: NTID and AIDB

USH2024 Diamond Sponsor Presentation: NTID and AIDB

USH2024 Keynote Presentation: Defying the Odds with Dr. Jasmine Simmons

USH2024 Keynote Presentation: Defying the Odds with Dr. Jasmine Simmons

USH2024 Welcome Remarks

USH2024 Welcome Remarks

Usher Syndrome: An Update on the Genetics, Genetic Counseling & Therapies (Pre-Recorded)

Usher Syndrome: An Update on the Genetics, Genetic Counseling & Therapies (Pre-Recorded)

Molecular Modeling of Usherin Disease Mechanisms and Interventions (Pre-Recorded)

Molecular Modeling of Usherin Disease Mechanisms and Interventions (Pre-Recorded)

Keynote Speaker from the USH Community, Becca Meyers

Keynote Speaker from the USH Community, Becca Meyers

Progress in New Therapy Development with USH1C Animal Models

Progress in New Therapy Development with USH1C Animal Models

Development of a Gene Therapy for Treatment of the Visual Impairment in Usher Syndrome 1B

Development of a Gene Therapy for Treatment of the Visual Impairment in Usher Syndrome 1B

Research Updates from Usher Syndrome Society Sponsored Projects

Research Updates from Usher Syndrome Society Sponsored Projects

Finding your North Star: Working Collaboratively with your Child’s School to Plan for the Future

Finding your North Star: Working Collaboratively with your Child’s School to Plan for the Future

Advancements in Hearing Technology

Advancements in Hearing Technology

Crafting a Career with Usher Syndrome

Crafting a Career with Usher Syndrome

Addressing Mental Health and Usher Syndrome

Addressing Mental Health and Usher Syndrome

What is Usher Syndrome Type IIIB? (with ASL)

What is Usher Syndrome Type IIIB? (with ASL)

USH1F Vision impairment: From clinical presentation to potential therapies (with ASL)

USH1F Vision impairment: From clinical presentation to potential therapies (with ASL)

NAC Attack (with ASL)

NAC Attack (with ASL)

Usher III Initiative (with ASL)

Usher III Initiative (with ASL)

Welcome to the Usher Syndrome Coalition's 2022 USH Connections Conference!

Welcome to the Usher Syndrome Coalition's 2022 USH Connections Conference!

Toward a Nonhuman Primate Model of USH1B (with ASL)

Toward a Nonhuman Primate Model of USH1B (with ASL)

USHDAY2023 Where in the World is USH? Usher syndrome

USHDAY2023 Where in the World is USH? Usher syndrome

Where in the World is USH? Usher Syndrome Awareness Day 2023

Where in the World is USH? Usher Syndrome Awareness Day 2023

Programa de colección de datos de el Síndrome Usher (Español)

Programa de colección de datos de el Síndrome Usher (Español)

Why participate in the Usher Syndrome Data Collection Program - ASL

Why participate in the Usher Syndrome Data Collection Program - ASL

Launch of the Usher Syndrome Data Collection Program

Launch of the Usher Syndrome Data Collection Program

Advocating for Usher Syndrome Research Funding (with ASL)

Advocating for Usher Syndrome Research Funding (with ASL)

USH2021: "Ask the Researchers" Usher Syndrome Q&A

USH2021: "Ask the Researchers" Usher Syndrome Q&A

USH2021: Supporting Mental Health Panel Discussion

USH2021: Supporting Mental Health Panel Discussion

USH2021: Living with Usher Syndrome Panel Discussion

USH2021: Living with Usher Syndrome Panel Discussion

Gene Therapy for USH2A Associated Retinal Dystrophy, Erwin van Wijk, PhD

Gene Therapy for USH2A Associated Retinal Dystrophy, Erwin van Wijk, PhD

Gene Therapy for Usher Syndrome Type 1F, David Corey, PhD (with ASL)

Gene Therapy for Usher Syndrome Type 1F, David Corey, PhD (with ASL)

Usher Syndrome Review and USH1C Research Update, Jennifer J. Lentz, PhD

Usher Syndrome Review and USH1C Research Update, Jennifer J. Lentz, PhD

The RUSH2A Study, Jacque Duncan, MD

The RUSH2A Study, Jacque Duncan, MD

Gene Therapy 101, Jennifer B Phillips, PhD

Gene Therapy 101, Jennifer B Phillips, PhD

Genetic Testing for Usher Syndrome, Gema García-García, PhD, Valencia Spain

Genetic Testing for Usher Syndrome, Gema García-García, PhD, Valencia Spain

Using Zebrafish to Develop the First Pharmacotherapy for the Treatment of Hearing Loss (with ASL)

Using Zebrafish to Develop the First Pharmacotherapy for the Treatment of Hearing Loss (with ASL)

Genetics 101, Karmen Trzupek, MS, CGC

Genetics 101, Karmen Trzupek, MS, CGC

Open Access Genetic Testing and Registries, Brian Mansfield, PhD (with ASL)

Open Access Genetic Testing and Registries, Brian Mansfield, PhD (with ASL)

Timothy Chambers shares how one sees with Usher syndrome retinitis pigmentosa (with ASL)

Timothy Chambers shares how one sees with Usher syndrome retinitis pigmentosa (with ASL)

About the USH Trust Registry, Nancy O'Donnell

About the USH Trust Registry, Nancy O'Donnell

Gene Therapy 101, Jennifer B. Phillips, PhD (with ASL)

Gene Therapy 101, Jennifer B. Phillips, PhD (with ASL)

The Best Hearing Technology for Usher Syndrome, Shanna M. Dewsnup_Au.D (with ASL)

The Best Hearing Technology for Usher Syndrome, Shanna M. Dewsnup_Au.D (with ASL)

Healthy Eating for Usher Syndrome, Sonia Romero (with ASL)

Healthy Eating for Usher Syndrome, Sonia Romero (with ASL)

The Role of RNA Therapies in Usher Syndrome, Friederich Asmus, MD (with ASL)

The Role of RNA Therapies in Usher Syndrome, Friederich Asmus, MD (with ASL)

Emerging Cross Cutting Therapies for Usher Syndrome, Ben Shaberman (with ASL)

Emerging Cross Cutting Therapies for Usher Syndrome, Ben Shaberman (with ASL)

Análisis genético del Síndrome de Usher, Gema García-García, PhD, Valencia ES

Análisis genético del Síndrome de Usher, Gema García-García, PhD, Valencia ES

Government Relations Strategy How you can be an advocate (with ASL)

Government Relations Strategy How you can be an advocate (with ASL)

Gene Therapy for MYO7A USH1B, Shannon Boye, PhD (with ASL)

Gene Therapy for MYO7A USH1B, Shannon Boye, PhD (with ASL)

Genetic Testing The USH2A Gene, Hannie Kremer, PhD

Genetic Testing The USH2A Gene, Hannie Kremer, PhD

Parent Journey to Pass Hearing Aid Legislation, Diane Wonchoba

Parent Journey to Pass Hearing Aid Legislation, Diane Wonchoba

USH1B Update, Shannon Boye, PhD (with ASL)

USH1B Update, Shannon Boye, PhD (with ASL)

Usher Syndrome Type 1C Research Update, Jennifer J. Lentz, PhD (with ASL)

Usher Syndrome Type 1C Research Update, Jennifer J. Lentz, PhD (with ASL)

Genetics 101, Karmen Trzupek, MS, CGC (with ASL)

Genetics 101, Karmen Trzupek, MS, CGC (with ASL)

Gene Therapy for Usher Syndrome Type 1F, David Corey, PhD

Gene Therapy for Usher Syndrome Type 1F, David Corey, PhD

About the USH Trust Registry, Nancy O'Donnell (with ASL)

About the USH Trust Registry, Nancy O'Donnell (with ASL)

A Journey Towards Finding a Cure for USH3, Cindy Elden (with ASL)

A Journey Towards Finding a Cure for USH3, Cindy Elden (with ASL)

Usher Syndrome and Cochlear Implants, Margaret Kenna, MD, MPH

Usher Syndrome and Cochlear Implants, Margaret Kenna, MD, MPH

Gene Therapy for Usher Syndrome Type 1C, Gwenaëlle Géléoc, PhD

Gene Therapy for Usher Syndrome Type 1C, Gwenaëlle Géléoc, PhD

With ASL: Resources for Young Adults, Megan Lengel

With ASL: Resources for Young Adults, Megan Lengel

Being a Child with Usher Syndrome, Bettina Kastrup Pedersen (with ASL)

Being a Child with Usher Syndrome, Bettina Kastrup Pedersen (with ASL)

Parent Journey to Pass Hearing Aid Legislation, Diane Wonchoba (with ASL)

Parent Journey to Pass Hearing Aid Legislation, Diane Wonchoba (with ASL)

Using Zebrafish to Develop the First Pharmacotherapy for the Treatment of Hearing Loss in USH1B

Using Zebrafish to Develop the First Pharmacotherapy for the Treatment of Hearing Loss in USH1B

Parent Potluck (Recorded Live Session)

Parent Potluck (Recorded Live Session)

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

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

The Role of RNA Therapies in Usher Syndrome, Friederich Asmus, MD

The Role of RNA Therapies in Usher Syndrome, Friederich Asmus, MD

A Journey Towards Finding a Cure for USH3, Cindy Elden

A Journey Towards Finding a Cure for USH3, Cindy Elden

Timothy Chambers shares how one sees with Usher syndrome (retinitis pigmentosa)

Timothy Chambers shares how one sees with Usher syndrome (retinitis pigmentosa)

The Best Hearing Technology for Usher Syndrome, Shanna M Dewsnup, Au.D.

The Best Hearing Technology for Usher Syndrome, Shanna M Dewsnup, Au.D.

Therapies to Preserve Vision in Usher Syndrome, Monte Westerfield, PhD

Therapies to Preserve Vision in Usher Syndrome, Monte Westerfield, PhD

Be My Eyes, Hans Jørgen Wiberg

Be My Eyes, Hans Jørgen Wiberg

Parent Journey to Pass Hearing Aid Legislation, Diane Wonchoba

Parent Journey to Pass Hearing Aid Legislation, Diane Wonchoba

Being a Child with Usher Syndrome, Bettina Kastrup Pedersen

Being a Child with Usher Syndrome, Bettina Kastrup Pedersen

Emerging Cross Cutting Therapies for Usher Syndrome, Ben Shaberman

Emerging Cross Cutting Therapies for Usher Syndrome, Ben Shaberman

Government Relations Strategy: How you can be an advocate

Government Relations Strategy: How you can be an advocate

USH1B Update, Shannon Boye, PhD

USH1B Update, Shannon Boye, PhD

Usher Syndrome Review and USH1C Research Update, Jennifer J. Lentz, PhD (with ASL)

Usher Syndrome Review and USH1C Research Update, Jennifer J. Lentz, PhD (with ASL)

Gene Therapy for MYO7A USH1B, Shannon Boye, PhD

Gene Therapy for MYO7A USH1B, Shannon Boye, PhD

Small Molecule and Gene Therapy Approaches to Mitigate Hearing Loss in USH3, Kumar Alagramam, PhD

Small Molecule and Gene Therapy Approaches to Mitigate Hearing Loss in USH3, Kumar Alagramam, PhD

iCanConnect the National Deaf Blind Equipment Distribution Program, Marcia Brooks

iCanConnect the National Deaf Blind Equipment Distribution Program, Marcia Brooks

Ask the Researchers (Recorded Live Q A Session)

Ask the Researchers (Recorded Live Q A Session)

Overview of the National Center on Deaf Blindness NCDB, Megan Cote

Overview of the National Center on Deaf Blindness NCDB, Megan Cote

ProQR Usher Syndrome Type 2 Development Program, Hester van Diepen, PhD

ProQR Usher Syndrome Type 2 Development Program, Hester van Diepen, PhD

Resources for Young Adults, Megan Lengel

Resources for Young Adults, Megan Lengel

Open Access Genetic Testing and Registries, Brian Mansfield Ph D

Open Access Genetic Testing and Registries, Brian Mansfield Ph D

Ask the Therapist with Rebecca Alexander, LCSW-R (Recorded Live Session)

Ask the Therapist with Rebecca Alexander, LCSW-R (Recorded Live Session)

Healthy Eating for Usher Syndrome Sonia Romero

Healthy Eating for Usher Syndrome Sonia Romero

Meet Tim Chambers, USH Ambassador for VA

Meet Tim Chambers, USH Ambassador for VA

Meet Trevor Turner, USH Ambassador for MN

Meet Trevor Turner, USH Ambassador for MN

ASHLEY STEWART IDAHO

ASHLEY STEWART IDAHO

Nilam Agrawal USH Ambassador India

Nilam Agrawal USH Ambassador India

USH Ambassador for Canada

USH Ambassador for Canada

USH Champions

USH Champions

VALERIE NORDSTROM TX

VALERIE NORDSTROM TX

Meet Meagan Moore

Meet Meagan Moore

Gene Therapy

Gene Therapy

Genetics 101

Genetics 101

#25 Resources through the Usher Syndrome Coalition

#25 Resources through the Usher Syndrome Coalition

#26 Looking Back. Looking Ahead.

#26 Looking Back. Looking Ahead.

#24 Kevin's First USH Connections Conference

#24 Kevin's First USH Connections Conference

#23 Fun Facts

#23 Fun Facts

#22 National Deaf-Blind Equipment Distribution Program

#22 National Deaf-Blind Equipment Distribution Program

#21 Communication

#21 Communication

#20 Diversity

#20 Diversity

#19 Employment

#19 Employment

#18 Higher Ed and Students with Usher Syndrome

#18 Higher Ed and Students with Usher Syndrome

#17 School Age Kids with Usher syndrome

#17 School Age Kids with Usher syndrome

#16 Induced Pluripotent Stem Cell Research

#16 Induced Pluripotent Stem Cell Research

#14 How Viruses Can Help

#14 How Viruses Can Help

#15 Treatments, Cures and Your Identity

#15 Treatments, Cures and Your Identity

# 13 The Research Process

# 13 The Research Process

#12 - Phenotype and Genotype

#12 - Phenotype and Genotype

#11 Kevin's Story

#11 Kevin's Story

#10 The USH Trust Registry - www.usher-registry.org

#10 The USH Trust Registry - www.usher-registry.org

#9 The Genetics of Usher Syndrome

#9 The Genetics of Usher Syndrome

#8 How do you know if you have Usher syndrome?

#8 How do you know if you have Usher syndrome?

#7 - Usher syndrome type 3

#7 - Usher syndrome type 3

#6 - Usher syndrome type 2

#6 - Usher syndrome type 2

#5 Usher syndrome type1

#5 Usher syndrome type1

#4 What is Retinitis Pigmentosa

#4 What is Retinitis Pigmentosa

#3 What is Usher syndrome?

#3 What is Usher syndrome?

#2 What is the Usher Syndrome Coalition

#2 What is the Usher Syndrome Coalition

#1 Own the Equinox

#1 Own the Equinox

RP Research Opportunity

RP Research Opportunity

Dance Like Nobody is Watching

Dance Like Nobody is Watching

USH CONNECTIONS CONFERENCE 2017

USH CONNECTIONS CONFERENCE 2017

USHVlog: CallingAllExperts

USHVlog: CallingAllExperts

Moira Shea Heads to the Hill for Usher Syndrome

Moira Shea Heads to the Hill for Usher Syndrome