USHER 2020 FOUNDATION INC
Never Loss Sight
USHER 2020 FOUNDATION INC
EIN: 46-1440524
as of November 2024
as of November 11, 2024
Programs and results
What we aim to solve
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
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.
Research Development
To create a path to bring treatments to patients.
Support to Researchers
To provide researchers with an avenue for collaboration and partnerships.
Where we work
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsNumber 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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2022 info
0.00
Months of cash in 2022 info
7.8
Fringe rate in 2022 info
0%
Funding sources info
Assets & liabilities info
Financial data
USHER 2020 FOUNDATION INC
Balance sheetFiscal Year: Jan 01 - Dec 31
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: Jan 01 - Dec 31
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
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 employeesSOURCE: IRS Form 990
Compensation data
There are no highest paid employees recorded for this organization.
USHER 2020 FOUNDATION INC
Board of directorsas of 11/16/2023
Board of directors data
Scott Dorfman
Innotrac Corporation
Term: 2012 -
Larry Dorfman
Easycare
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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:
The organization's co-leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.