USHER 2020 FOUNDATION INC

Never Loss Sight

aka Usher 2020   |   Atlanta, GA   |  www.usher2020.org

Mission

To bring treatments to end blindness for those with Usher Syndrome and Retinitis Pigmentosa to clinical trials by 2025.

Ruling year info

2013

Chairman of Board

Scott Dorfman

Executive Director

Susie Trotochaud

Main address

209 Peachtree Circle NE C/O Susie Trotochaud

Atlanta, GA 30309 USA

Show more contact info

EIN

46-1440524

NTEE code info

Specifically Named Diseases (G80)

Eye Diseases, Blindness and Vision Impairments (G41)

Eye (H41)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Usher Syndrome is a rare disease, and because of that, it is difficult, if not impossible to bring treatments to patients using the common model for drug and biotech therapies. Therefore, we have created a new model through a partnership with Mass Eye & Ear (MEEI) and developed a non-profit biotech company called Odylia Therapeutics. Odylia is now working with Usher 2020 and our independent research team on an aggressive 2 year program to test a gene therapy and bring that treatment to the FDA for IND approval. In addition, we are actively supporting a drug therapy treatment to slow the progression of vision loss (specifically cone death) in those with Retinitis Pigmentosa (RP).

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?

Fund Research

To fund research that will help slow, stop or reverse the degeneration of sight caused by Usher Syndrome and Retinitis Pigmentosa.

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

To create a path to bring treatments to patients.

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

To provide researchers with an avenue for collaboration and partnerships.

Population(s) Served
Academics

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 researchers funded

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with hearing impairments, People with vision impairments

Related Program

Fund Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Decreasing

Context Notes

We have narrowed our funding to 3 programs; 2 of which are designed to move into clinical trials. One program is through a single research organization; the other is a collaborative effort.

Dollars paid toward research

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with hearing impairments, People with vision impairments

Related Program

Fund Research

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

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 mission of Usher 2020 Foundation is to stop, slow or reverse the progression of sight-loss caused by Usher Syndrome and Retinitis Pigmentosa (RP). Our goal is to have treatments in clinical trials by the year 2025.

It is our short term goal to bring a drug therapy treatment to clinical trial no later than 2022, and our gene therapy treatment to trial by the year 2025.

Usher 2020 Foundation does this by focusing on funding research and creating opportunities for scientists and clinicians to collaborate, as well as filling in the gaps that exist to move therapies into patients.

Usher 2020 focuses only on moving proven research into clinical trials for patients. By constantly reviewing the latest science and research available, funding the best sources, facilitating collaboration, and expediting treatments, Usher 2020 is moving closer to our goal of slowing the progression of blindness in those with Retinitis Pigmentosa, and stopping the loss of sight in those with a rare form of Usher Syndrome.

1. At LSU, we have advanced the basic science to the point where we are prepared to begin the IND process, and we have provided the researcher with consultation on how to proceed to clinical trial.
2. At MEEI, we have advanced the development of an AAV vector and are supporting the work toward correcting the USH 1C gene.
3. At Iowa, we have supported the advancement of both gene and stem cell therapies toward clinical trials.
4. We have secured Johannes Guttenberg University in Mainz, German, to study the isoform of the USH 1C gene, and to facilitate the creation of a pig model, both needed to bring gene therapy to the clinic.
5. We are supporting work at NEI/NIH for testing the library of drugs available to slow the progression of vision loss in those with Usher Syndrome.
6. We have created a model for all rare diseases to move treatments from the lab into the clinic.
7. We have funded an extension study to bring a drug that will slow the progression of sight loss for those with Retinitis Pigmentosa to clinical trial.
8. We have created a collaborative network of researchers and clinicians to bring a gene therapy treatment for Usher Syndrome to clinical trial.
9. We have supported the design of a clinical trial using a drug therapy to slow the progression of Retinitis Pigmentosa.
10. We have begun testing a gene therapy treatment for a rare form of Usher Syndrome in a large animal model.

Financials

USHER 2020 FOUNDATION INC
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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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  • 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 2020 FOUNDATION INC

Board of directors
as of 4/24/2021
SOURCE: Self-reported by organization
Board chair

Scott Dorfman

Innotrac Corporation

Term: 2012 -

Larry Dorfman

Easycare

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 04/24/2021

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
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-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