Medical Research

USHER 1F COLLABORATIVE INC

Vision for Our Future

Newtonville, MA

Mission

Usher 1F Collaborative is a 501c3 nonprofit foundation whose mission is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F.

Ruling Year

2014

President and Director

Melissa Kershman Chaikof

Vice President and Director

Dr. Elliot L. Chaikof

Main Address

321 Walnut St., No 228

Newtonville, MA 02460 USA

Formerly Known As

Vision for a Cure

Keywords

Deaf-Blindness, Medical Research, Ashkenazi Jewish, genetic diseases

EIN

46-4309387

 Number

6635630618

Cause Area (NTEE Code)

Fund Raising and/or Fund Distribution (H12)

Eye (H41)

Alliance/Advocacy Organizations (G01)

IRS Filing Requirement

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

Sign in or create an account to view Form(s) 990 for 2018, 2017 and 2016.
Register now

Social Media

Blog

Programs + Results

What we aim to solve

Usher Syndrome is the leading cause of inherited deaf-blindness. Type 1 is the most severe, with those affected born profoundly deaf with impaired balance. During childhood to adolescence, they begin to lose their vision to retinitis pigmentosa, first with night blindness, followed by increasingly narrowing tunnel vision, until total blindness results sometime during adulthood. Usher 1F Collaborative seeks to find a cure for Usher Syndrome type 1F, which is caused by mutations on the PCDH15 gene.

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

Usher 1F Project, Westerfield Lab, University of Oregon Institute of Neuroscience

Project Usher, The Institute for Vision Research at the University of Iowa

University of Maryland

University of Western Australia

University of Pittsburgh, Department of Ophthalmology

Usher 1F Research Project at the Corey Lab

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 research studies funded

TOTALS BY YEAR
Population(s) served

People with hearing impairments,

People with vision impairments

Related program

Usher 1F Project, Westerfield Lab, University of Oregon Institute of Neuroscience

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context notes

We fund research labs to conduct translational research for a cure for the vision loss of Usher Syndrome type 1F.

Number of research studies conducted

TOTALS BY YEAR
Population(s) served

People with hearing impairments,

People with vision impairments

Related program

University of Maryland

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context notes

Testing begun of multiple gene therapy treatments for the vision loss of Usher 1F.

Number of grants and research funding awarded to the institution

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Usher 1F Project, Westerfield Lab, University of Oregon Institute of Neuroscience

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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?

Usher 1F Collaborative is working to fund medical research to find an effective treatment or cure for the vision loss of Usher Syndrome type 1F. Our goal is to both halt further vision loss and reverse vision loss in those already affected and to prevent vision loss in babies born with this disorder.

We have identified 3 potential paths to a cure, gene, drug, and stem cell therapies. Our initial goal was to develop an animal model of the Usher 1F mutation on which to test potential therapies. We now have both a zebrafish and mouse model, both of which display all 3 traits of Usher 1F, profound deafness from birth, an impaired vestibular system, and progressive vision loss. The challenge to developing gene therapy for Usher 1F is that our gene is large and will not fit on the current viral vectors used to deliver replacement genes. Thus, our researchers are working on 4 different strategies, a split gene dual vector approach, a mini-gene, base editing, and development of an AAV viral vector that will hold our entire large gene. We have already begun testing of translational readthrough inducing drugs on our zebrafish model and plan to test dugs already approved for other uses shortly. Finally, one researcher is developing stem cell therapies using patients' own skin cells

We have a board comprised of people with the necessary and complementary skills, 3 PhD research scientists, including one MD, PhD, one working in pharma venture capital, and one working in drug development, along with other board members with connections to wealthy individuals to help raise funds for research, and, last but not least, a group of affected, dedicated, and determined families. We have now engaged 5 research teams who are specifically researching Usher 1F, including at Harvard, the University of Oregon Institute of Neuroscience, the University of Iowa Institute for Vision Research, the University of Maryland, and the University of Western Australia. In addition, we are partnering with a team at the Center for Eye Research Australia. Finally, our two animal models have opened up paths for testing potential treatments.

Measuring progress for us is very clearcut - When our researchers develop potential treatments that show arresting and/or reversing of vision loss in our animal models, we will know we are closer to reaching our goal. In the interim, having treatments, such as a mini-gene and split gene ready for testing in our animal models, comprise our short term goals. Our long term goal is to have a clinical trial in humans approved and to realize success in a clinical trial.

We have: Developed 2 animal models that share all 3 human Usher 1F traits Engaged 4 research labs dedicated to Usher 1F specific research Partnered with 2 research labs obtaining their own funding for Usher 1F specific research Directly funded over $1 million in research and helped our partners raise another $2 million Begun development of gene and stem cell therapies for Usher 1F Have 3 split gene treatments developed and beginning in vitro testing with 2 more anticipated shortly

External Reviews

Financials

USHER 1F COLLABORATIVE INC

Need more info on this nonprofit?

Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

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?

No

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?

No

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

No

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

No

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Sexual Orientation

This organization reports that it does not collect this information for Board Members.

Disability

This organization reports that it does not collect this information for Board Members.

Diversity Strategies

close
We track retention of staff, board, and volunteers across demographic categories
close
We track income levels of staff, senior staff, and board across demographic categories
close
We track the age of staff, senior staff, and board
close
We track the diversity of vendors (e.g., consultants, professional service firms)
close
We have a diversity committee in place
close
We have a diversity manager in place
close
We have a diversity plan
close
We use other methods to support diversity
Diversity notes from the nonprofit
We are an all-volunteer run organization. We do not employ staff.