PLATINUM2023

USHER 2020 FOUNDATION INC

Never Loss Sight

aka Usher 2020   |   Atlanta, GA   |  www.usher2020.org
GuideStar Charity Check

USHER 2020 FOUNDATION INC

EIN: 46-1440524


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

Subject area info

Diseases and conditions

Population served info

People with vision impairments

People with hearing impairments

NTEE code info

Specifically Named Diseases (G80)

Eye Diseases, Blindness and Vision Impairments (G41)

Eye (H41)

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.

We achieved our short term goal to bring a drug therapy treatment to clinical trial in 2022 (NAC Attack Clinic Trial was accepted and funded by NEI in 2022, patient enrollment beginning in 2023), 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 supported 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, and supported patient enrollment and retention in this trial.
10. We have begun testing a gene therapy treatment for a rare form of Usher Syndrome in a large animal model.

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 shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

0.00

Average of 0.00 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

7.8

Average of 24.6 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

0%

Average of 0% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

USHER 2020 FOUNDATION INC

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

USHER 2020 FOUNDATION INC

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

USHER 2020 FOUNDATION INC

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of USHER 2020 FOUNDATION INC’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation -$426,676 $119,780 $108,040 $235,232 -$127,063
As % of expenses -51.1% 53.7% 44.5% 74.0% -47.4%
Unrestricted surplus (deficit) after depreciation -$426,676 $119,780 $108,040 $235,232 -$127,063
As % of expenses -51.1% 53.7% 44.5% 74.0% -47.4%
Revenue composition info
Total revenue (unrestricted & restricted) $461,791 $342,484 $351,309 $558,053 $165,328
Total revenue, % change over prior year -31.4% -25.8% 2.6% 58.8% -70.4%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.3% 0.1% 0.0% 1.0% 7.5%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 87.4% 99.8% 100.3% 99.0% 98.3%
Other revenue 12.2% 0.0% -0.3% 0.0% -5.8%
Expense composition info
Total expenses before depreciation $835,385 $222,934 $242,984 $317,899 $268,018
Total expenses, % change over prior year 58.2% -73.3% 9.0% 30.8% -15.7%
Personnel 0.0% 0.0% 0.0% 0.0% 0.0%
Professional fees 0.0% 3.3% 1.2% 0.7% 0.9%
Occupancy 0.0% 0.0% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 97.0% 86.3% 92.1% 95.3% 90.5%
All other expenses 3.0% 10.4% 6.7% 4.0% 8.5%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $835,385 $222,934 $242,984 $317,899 $268,018
One month of savings $69,615 $18,578 $20,249 $26,492 $22,335
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $905,000 $241,512 $263,233 $344,391 $290,353

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 1.3 5.4 15.6 6.7 7.8
Months of cash and investments 1.3 11.2 15.6 20.8 19.0
Months of estimated liquid unrestricted net assets 1.3 11.2 15.6 20.8 19.0
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $87,981 $100,645 $315,801 $176,463 $173,700
Investments $0 $107,116 $0 $374,570 $250,270
Receivables $0 $0 $0 $0 $0
Gross land, buildings, equipment (LBE) $0 $0 $0 $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 0.0% 0.0%
Liabilities (as a % of assets) 0.0% 0.0% 0.0% 0.0% 0.0%
Unrestricted net assets $0 $0 $0 $0 $0
Temporarily restricted net assets $0 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $0 $0 $0 $0 $0
Total net assets $87,981 $207,761 $315,801 $551,033 $423,970

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

Chairman of Board

Scott Dorfman

Executive Director

Susie Trotochaud

Number of employees

Source: IRS Form 990

USHER 2020 FOUNDATION INC

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

USHER 2020 FOUNDATION INC

Board of directors
as of 11/16/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this 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 ? Not applicable
  • 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 11/16/2023

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
White/Caucasian/European
Gender identity
Male, Not transgender
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
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

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