Usher Syndrome Family Center at CHC
Highlight Stats
Principal Agency or Investigator: Center for Hearing & Communication
Focus Area(s): Language, Communication & Connection | Mental & Emotional Wellbeing
Grant Amount: $500,000
Grant Time: 36 months
Grant Details
Executive Overview
The Fairfield Fund partnered with The Center for Hearing & Communication (CHC) to support the creation of the Usher Syndrome Family Center — a coordinated, family-centered program designed to help children and families navigate the complex challenges of combined hearing and vision loss associated with Usher syndrome.
For many families, an Usher syndrome diagnosis can be overwhelming and isolating. Parents are often left trying to independently coordinate care across multiple specialists while simultaneously learning about hearing loss, progressive vision loss, vestibular dysfunction, education planning, assistive technology, orientation and mobility services, and mental health support. Traditional systems frequently separate these services, forcing families to navigate fragmented care during some of the most vulnerable moments of their lives.
The Usher Syndrome Family Center aims to change that by creating an integrated support model where families can access coordinated services, trusted guidance, educational resources, and community connection in one place. The program will bring together expertise across audiology, speech and language, education, mental health, assistive technology, orientation and mobility, and deafblind support services to help families build practical tools and long-term confidence as their children grow.
Importantly, this grant is not focused on a single intervention or short-term service. It is designed to help establish sustainable infrastructure for the Usher syndrome community — building systems, training, expertise, and coordinated care models that can support families over time and help close a longstanding gap in deafblind services. Like translational research infrastructure accelerates science, coordinated family infrastructure helps improve quality of life, independence, educational outcomes, and long-term support for children living with dual sensory loss.
The program will support:
• Coordinated multidisciplinary care for families affected by Usher syndrome
• Specialized educational and deafblind-informed programming
• Family navigation and advocacy support
• Orientation and mobility integration
• Assistive technology access and training
• Mental health and emotional support services
• Parent connection and peer support
• Staff training in deafblind competency and Usher syndrome-specific needs
Impact on Usher Syndrome 1B Patients
Usher syndrome affects both hearing and vision, often requiring families to navigate multiple disconnected systems of care simultaneously. While hearing loss services and blindness services each exist independently, coordinated expertise specifically designed for children living with dual sensory loss remains limited in many regions.
The Usher Syndrome Family Center seeks to address this gap by creating a model that integrates hearing, vision, communication, education, emotional health, and accessibility support into a unified care experience. Families will have access to professionals who understand how hearing and vision changes interact over time — and how those changes impact communication, learning, independence, mobility, and mental health.
Importantly, this work extends beyond immediate clinical support. The program emphasizes early intervention, parent advocacy, self-advocacy skills for children and teenagers, environmental accessibility, and practical daily living strategies that help individuals with Usher syndrome maintain independence and confidence as their needs evolve.
The Fairfield Fund believes that accelerating treatments and supporting lives must happen in parallel. While research remains critical, families also need tools, services, community, and coordinated support today. By helping establish the Usher Syndrome Family Center at CHC, we hope to strengthen the broader ecosystem of support available to children and families navigating deafblindness — creating a model that can continue growing alongside scientific progress.
