Usher Syndrome Coalition

Connecting the global Usher syndrome community.

aka Coalition for Usher Syndrome Research   |   Westford, MA   |  http://www.usher-syndrome.org/

Mission

The Usher Syndrome Coalition's mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.

Ruling year info

2010

Board Chair

Lanya McKittrick

Main address

9 Cornerstone Sq, Suite 400-224

Westford, MA 01886 USA

Show more contact info

EIN

26-4560897

NTEE code info

Eye Diseases, Blindness and Vision Impairments (G41)

Deaf/Hearing Impaired Centers, Services (P87)

Alliance/Advocacy Organizations (H01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
People with vision impairments
People with hearing impairments

The USH Blue Book (formerly known as the Family Network) connects individuals with Usher syndrome, family members and friends in a global network of support.

Population(s) Served
People with vision impairments
People with hearing impairments

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.

Population(s) Served
People with vision impairments
People with hearing impairments

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.

Population(s) Served
People with vision impairments
People with hearing impairments

Advocacy efforts to prioritize Usher syndrome research at the National Institutes of Health.

Population(s) Served
People with vision impairments
People with hearing impairments

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.

Population(s) Served
People with vision impairments
People with hearing impairments

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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
• Unraveling USH - an Usher syndrome genetic testing initiative
• 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
• 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

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.

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 1,600 registrants from 68 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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.

  • 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.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • 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,

  • 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 are coordinating our first-ever hybrid event, in-person in Austin, Texas and live-streamed for those who prefer to attend online.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    We exist because of and for the Usher community. We aim to include, listen to and lead with members of the Usher community that represent the diverse and varied experiences of living with this rare disease. This can be particularly challenging with such a diverse community comprised of anything from parents of newborns just diagnosed with Usher syndrome, to older adults who are firmly embedded in the culturally Deaf/DeafBlind communities. Generationally and culturally, the needs and perspectives of an adult born deaf 60 years ago and later diagnosed with Usher syndrome are vastly different than that of a baby or child diagnosed with Usher syndrome today. We know we can't be everything for everyone, but we do strive to offer something valuable to all.

  • 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,

  • 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

Usher Syndrome Coalition
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build 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

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Usher Syndrome Coalition

Board of directors
as of 04/22/2022
SOURCE: Self-reported by organization
Board chair

Lanya McKittrick

Margaret Kenna, MD, MPH

Dept. of Otolaryngology and Communication Enhancement, Boston Children's Hospital

William Kimberling, PhD

Boys Town National Research Hospital (Retired)

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 type 2A, Certified Public Accountant

Monte Westerfield, PhD

Director, Usher syndrome research laboratory, University of Oregon

Kathy Thompson, PhD

Adult with Usher syndrome, Management Consultant

Lanya McKittrick

Mother of two children with Usher syndrome, Co-founder of the Hear See Hope Foundation

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 4/21/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 02/17/2021

GuideStar 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

Data
  • 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.
Policies and processes
  • 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.