MUCOLIPIDOSIS TYPE IV FOUNDATION INC
MUCOLIPIDOSIS TYPE IV FOUNDATION INC
EIN: 13-3633501
Mission
The ML4 Foundation is a non-profit corporation founded by families whose lives have been affected by ML4.
The mission of the Foundation is to fund, promote, and support medical research dedicated to developing effective treatments and ultimately, curing ML4 by
Providing financial support to researchers to pursue scientific endeavors related to ML4;
Linking individuals with ML4 to researchers performing clinical studies;
Encouraging established researchers to stimulate interest in ML4 at high academic levels;
Sponsoring research and family conferences to inspire cooperation, communication, and collaboration among scientific researchers, academic institutions, charitable organizations, governmental agencies, and ML4 families;
Ruling year
2012
President of the Board
Mr. Randy Gold
Main address
1440 Spring Street
Atlanta, GA 30309 USA
EIN
13-3633501
Diseases and conditions
Genetic conditions and birth defects
Population served
Children and youth
Adults
People with disabilities
People with diseases and illnesses
NTEE code
Birth Defects, Genetic Diseases Research (H20)
Specifically Named Diseases (G80)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
What we aim to solve
Our mission is to create meaningful treatments for people living with Mucolipidosis Type IV. To accomplish this we have funded research in the basic science of the disease to fully characterize the mechanism of action. In addition, we have funded natural history research, as well as pivotal international patient and researcher conferences which bring together the scientific and patient communities in collaborative research discussion about pathology and treatment.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Scientific Research
We fund research at several academic laboratories that investigate mucolipidosis type IV.
Where we work
External reviews
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?
Our goal is to use gene therapy, drug therapy, and clinical studies of ML4 patients to develop a treatment and cure for ML4
What are the organization's key strategies for making this happen?
Our strategy for developing a treatment and cure for ML4 is to build collaborations among researchers across the globe in order to build on scientific discoveries related to ML4 and to fund scientific research that will further our mission.
What are the organization's capabilities for doing this?
We have attracted and funded some of the most widely respected scientists from the US and Europe each working within their specific area of expertise and each providing scientific findings that together will lead to a treatment or a cure for ML4.
What have they accomplished so far and what's next?
The Foundation has funded research that has created multiple animal models of the disease and is using those models to understand the therapeutic effects of various scientific studies.
We have funded researchers with deep knowledge of ML4 and similar diseases to further the scientific knowledge about the disease.
We have created successful proof of concept that gene therapy for MLIV succeeds in efficacy and expression.
Financials
Revenue vs. expenses: breakdown
Liquidity in 2021 info
1122.08
Months of cash in 2021 info
14
Fringe rate in 2021 info
12%
Funding sources info
Assets & liabilities info
MUCOLIPIDOSIS TYPE IV FOUNDATION INC
Revenue & expensesFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
MUCOLIPIDOSIS TYPE IV FOUNDATION INC
Balance sheetFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
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
SOURCE: IRS Form 990
This snapshot of MUCOLIPIDOSIS TYPE IV 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 | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | -$27,799 | -$271,281 | $410,309 | $210,261 | -$39,110 |
| As % of expenses | -5.3% | -35.5% | 110.4% | 47.5% | -5.5% |
| Unrestricted surplus (deficit) after depreciation | -$27,799 | -$271,281 | $410,309 | $210,261 | -$39,110 |
| As % of expenses | -5.3% | -35.5% | 110.4% | 47.5% | -5.5% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $499,042 | $493,684 | $781,850 | $652,541 | $676,492 |
| Total revenue, % change over prior year | 8.7% | -1.1% | 58.4% | -16.5% | 3.7% |
| 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 | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Government grants | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| All other grants and contributions | 100.0% | 100.0% | 100.0% | 100.0% | 100.0% |
| Other revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $526,841 | $764,965 | $371,541 | $442,280 | $715,602 |
| Total expenses, % change over prior year | 13.5% | 45.2% | -51.4% | 19.0% | 61.8% |
| Personnel | 31.5% | 25.0% | 49.3% | 45.3% | 25.8% |
| Professional fees | 0.0% | 0.0% | 0.0% | 0.8% | 0.5% |
| Occupancy | 0.8% | 0.5% | 1.1% | 0.9% | 0.6% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 63.7% | 65.4% | 44.4% | 50.8% | 72.1% |
| All other expenses | 4.0% | 9.1% | 5.2% | 2.2% | 1.0% |
| Full cost components (estimated) info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $526,841 | $764,965 | $371,541 | $442,280 | $715,602 |
| One month of savings | $43,903 | $63,747 | $30,962 | $36,857 | $59,634 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $0 | $0 | $0 | $0 | $0 |
| Total full costs (estimated) | $570,744 | $828,712 | $402,503 | $479,137 | $775,236 |
Capital structure indicators
| Liquidity info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Months of cash | 11.7 | 4.3 | 21.5 | 24.5 | 14.0 |
| Months of cash and investments | 11.7 | 4.3 | 21.5 | 24.5 | 14.0 |
| Months of estimated liquid unrestricted net assets | 12.0 | 4.0 | 21.6 | 23.8 | 14.1 |
| Balance sheet composition info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Cash | $515,128 | $272,542 | $665,052 | $901,274 | $835,427 |
| Investments | $0 | $0 | $0 | $0 | $0 |
| Receivables | $0 | $0 | $3,890 | $3,890 | $3,890 |
| 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) | 0.3% | 5.7% | 0.2% | 3.0% | 0.1% |
| Unrestricted net assets | $0 | $0 | $0 | $0 | $0 |
| Temporarily restricted net assets | $0 | $0 | N/A | N/A | N/A |
| Permanently restricted net assets | $0 | $0 | N/A | N/A | N/A |
| Total restricted net assets | $0 | $0 | $0 | $0 | $0 |
| Total net assets | $528,938 | $257,657 | $667,966 | $878,227 | $839,117 |
Key data checks
| Key data checks info | 2017 | 2018 | 2019 | 2020 | 2021 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President of the Board
Mr. Randy Gold
Number of employees
Source: IRS Form 990
MUCOLIPIDOSIS TYPE IV FOUNDATION INC
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
MUCOLIPIDOSIS TYPE IV FOUNDATION INC
Highest paid employeesSOURCE: IRS Form 990
Compensation data
MUCOLIPIDOSIS TYPE IV FOUNDATION INC
Board of directorsas of 01/26/2023
Board of directors data
Randy Gold
No Affiliation
Paula Kutner
Janet Price
David Reich
Caroline Gold
Michael Friedman
Novartis
Board leadership practices
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 ? Yes -
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? Yes
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