Usher Syndrome Coalition
Connecting the global Usher syndrome community.
Programs and results
What we aim to solve
Researchers are not in touch with enough people living with Usher syndrome worldwide. While considered a rare disease, Usher syndrome (USH) is the most common genetic cause of combined deafness and blindness. USH is progressive, posing challenges throughout life requiring constant adjustments as vision and hearing deteriorate with age. Children with USH are born with or develop hearing loss and may also be born with or develop vestibular issues which adversely affect their balance. By the time they reach adolescence, retinitis pigmentosa (RP), the cause of vision loss in USH, becomes evident. Usher syndrome can be profoundly isolating. Too often, people are told they're going blind, there are no treatments, and nothing can be done. Worse, they're told Usher syndrome is so rare that they likely won't meet anyone else affected. The Usher Syndrome Coalition is working to dispel these myths, building an empowered and informed community that is paving the path to treatments and a cure.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
USH Trust
The USH Trust is the largest international Usher syndrome registry in the world.
People with Usher syndrome have told us they want information, treatment and a cure. Researchers have the same goals. Yet the biggest challenge we face is connecting these two communities.
Of the estimated 400,000 people worldwide living with Usher syndrome, the research community is in touch with less than 1%.
We are working hard to change that.
The USH Trust is a confidential, simple and secure place for everyone with Usher syndrome to sign up, be connected, be informed and be involved. By being part of the USH Trust, you will be the first to know about clinical trials.
USH Blue Book
The USH Blue Book connects individuals with Usher syndrome, family members and friends in a global network of support.
Global Campaign to Own the Equinox for Usher Syndrome Awareness
The autumnal equinox is the point when daylight and darkness hang in perfect balance, the moment before those in the northern hemisphere slip into darker days. It is a powerful metaphor for the threat of Usher syndrome and the state of Usher syndrome research.
The Usher syndrome community has the power, today, to stop their world from sliding into darkness. We will Own the Equinox, claiming the third Saturday in September as Usher Syndrome Awareness Day, every year until Usher syndrome is history. People with USH need to know that they are not alone. Government officials need to know Usher syndrome will cost much less to cure than it does to provide services. The world needs to know that we are fighters, that we will never give up, that we believe in making the impossible possible.
Unraveling USH: An Usher Syndrome Genetic Testing Initiative
A collaborative effort with Project Usher at the Stephen A. Wynn Institute for Vision Research to ensure everyone with Usher syndrome has access to genetic testing.
Advocacy on Capitol Hill
Advocacy efforts to prioritize Usher syndrome research at the National Institutes of Health.
USH Connections Conferences
At the largest annual gathering of the USH community, attendees have the opportunity to learn the latest on developing treatments from leading USH researchers while connecting with hundreds of impacted individuals, their families, and professionals serving the deafblind community.
Where we work
External reviews

Our results
How does this organization measure their results? It's a hard question but an important one.
Number of countries represented by visitors
This metric is no longer tracked.Totals By Year
Population(s) Served
People with hearing impairments, People with vision impairments
Related Program
USH Trust
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
The USH Trust registry includes adults and children from 71 countries.
Number of conference attendees
This metric is no longer tracked.Totals By Year
Population(s) Served
Families, People with hearing impairments, People with vision impairments
Related Program
USH Connections Conferences
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
A Look Back at the USH Connections Conferences (2018 and 2014 numbers reflect both in-person and livestream participants of the multi-day International Symposium on Usher Syndrome.)
Number of new website visitors
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Metric reflects first-time visitors to our website, which aims to be the most comprehensive resource for the Usher syndrome community, regularly updated with the latest research and community news.
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Metric reflects unique visitors to our website, which aims to be the most comprehensive resource for the Usher syndrome community, regularly updated with the latest research and community news.
Number of USH Ambassadors
This metric is no longer tracked.Totals By Year
Related Program
USH Trust
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Volunteers who are knowledgeable about Usher syndrome and the community, and are willing to be a point of contact and the "connector" in their state or country.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The Usher Syndrome Coalition aims to identify and connect the 400,000+ people living with Usher syndrome worldwide with researchers, vital information, and others in the Usher syndrome community. By bridging the gap between researchers and those impacted, we will expedite the full understanding of Usher syndrome necessary for the development of treatments for the associated vision, hearing and vestibular issues and, ultimately, a cure.
What are the organization's key strategies for making this happen?
The Coalition believes the first step to finding viable treatments for Usher syndrome is the development of an Usher syndrome community. The strategies we use to accomplish our mission are implemented through the following initiatives to identify, connect and support the entire Usher syndrome community:
• USH Trust -- the largest international registry of individuals with Usher syndrome
• USH Ambassador Program - USH Ambassadors are volunteers who are knowledgeable about Usher syndrome and the community and are willing to be a point of contact in their state or country. Ambassadors play a key role in growing our community.
• International Symposium on Usher Syndrome - scientific forum where the world's leading experts come together in an environment that encourages collaboration and the exchange of ideas in order to advance Usher syndrome research.
• USH Connections Conference – annual event connecting individuals with Usher syndrome and their family members with scientists, doctors, and professionals to learn about the latest advances in Usher syndrome research
• USH on Capitol Hill – advocacy efforts to prioritize Usher syndrome research at the National Institutes of Health
• Unraveling USH - an Usher syndrome genetic testing initiative
• USH Talks - a new podcast series educating the Usher syndrome community about a wide variety of topics, including the latest in research developments
• USH Blue Book – a web-based email group and online forum connecting individuals and families affected with Usher syndrome in a global network of support
• USH Yellow Book - an online directory of experts in Usher syndrome
What are the organization's capabilities for doing this?
We are the only organization in the world seeking to identify and support every person living with Usher syndrome.
In the 150+ years since Usher syndrome was identified, the Coalition is the first organization to attempt to break down the walls of isolation within this community. By providing hope, connection and information, we are building an active, empowered and informed community. This gives researchers access to their most important resource: people living with Usher syndrome.
What have they accomplished so far and what's next?
Of the estimated 400,000 people worldwide living with Usher syndrome, the Coalition and research community have access to less than 1 percent. Through our initiatives outlined above, we are working to identify, educate and connect with 100 percent of those impacted and their families. To date, our USH Trust aligns over 2,200 registrants from 74 countries with the latest in research; and we engage more than 5,000 members of the Usher syndrome community through our other initiatives.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
Usher syndrome (USH) is the most common genetic cause of combined deafness and blindness. It is a rare disease, impacting an estimated 400,000 individuals worldwide and 20-50,000 individuals in the United States. The Usher Syndrome Coalition is working to find and support every individual and family living with USH, regardless of where they live, what type of USH they were born with, or their method of communication. The Usher Syndrome Coalition is connecting the global Usher syndrome community, one person at a time.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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What significant change resulted from feedback?
After two years of missed in-person connection due to the pandemic, we asked our community how they would like to gather for our annual conference; in-person or virtually. Taking that feedback, we hosted our first-ever hybrid event in July 2022, in-person in Austin, Texas and live-streamed for those who chose to attend online. Each year the USH Connections Conference reminds those in the Usher community that they are not alone, empowering families with knowledge about Usher syndrome and current research efforts. Consistent feedback at these conferences requests more time to socialize and connect with others. In response, we've created a new series of events in 2023: USH Local Socials, which will be hosted by representatives of the Coalition across the country and internationally.
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, The need for language translation can be overwhelming
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Usher Syndrome Coalition
Board of directorsas of 02/09/2023
Lanya McKittrick
Margaret Kenna, MD, MPH
Dept. of Otolaryngology and Communication Enhancement, Boston Children's Hospital
David Alexander
Father of an adult daughter with Usher syndrome, Disability Rights Advocate
Danay Trest
Adult with Usher syndrome, University Mississippi Medical Center (Retired)
Nancy Corderman
Mother of two adult children with Usher syndrome, Co-founder of the Usher Syndrome Society
Kelley Stidd
Mother of a daughter with Usher syndrome, Certified Public Accountant
Monte Westerfield, PhD
Director, Usher syndrome research laboratory, University of Oregon
Lanya McKittrick
Mother of two children with Usher syndrome, Co-founder of the Hear See Hope Foundation
Kathy Anamisis
Mother of a son with Usher syndrome. Project Manager for a global engineering firm.
Tara Bowman
Adult with Usher syndrome, Attorney.
Jennifer J. Lentz, PhD
Associate Professor in Otorhinolaryngology, Ophthalmology, Genetics, Neuroscience Center, LSU Health New Orleans.
Steve Mason
Wife has Usher syndrome, Accountant
Steven McCoy
Adult with Usher syndrome, recognized as the first black deafblind journalist.
Eric Wagner, PhD
Adult with Usher syndrome, Product Design Scientist in the Pharmaceutical Industry (medically retired)
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 02/17/2021GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We use a vetting process to identify vendors and partners that share our commitment to race equity.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.