Disease, Disorders, Medical Disciplines

Usher Syndrome Coalition

Connecting the global Usher community.

aka Coalition for Usher Syndrome Research

Maynard, MA

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

2010

Chairman

Mark Dunning

Main Address

63 Great Road, Suite 207

Maynard, MA 01754 USA

Keywords

hearing loss, deaf, hearing impaired, vision loss, blind, family network, registry, support, resources and information, research

EIN

26-4560897

 Number

8530584473

Cause Area (NTEE Code)

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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Social Media

Blog

Programs + 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?

SOURCE: Self-reported by organization

USH Trust

USH Blue Book

Global Campaign to Own the Equinox for Usher Syndrome Awareness

Unraveling USH: An Usher Syndrome Genetic Testing Initiative

Advocacy on Capitol Hill

USH Connections Conferences

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of countries represented by visitors

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 people from 61 countries.

Number of conference attendees

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.)

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

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.

By annual increases in the number of individuals in the USH Trust and the USH Blue Book; increased participation at USH Connections Conferences; annual increases in the number of views of USH Talks; researchers' reports that they have access to more members of the Usher syndrome community through the Coalition's resources; and positive feedback about the resources provided to support the Usher syndrome community.

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 1,300 registrants from 61 countries with the latest in research; and we engage more than 4,000 members of the Usher syndrome community through our other initiatives.

External Reviews

Financials

Usher Syndrome Coalition

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Operations

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

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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