Liabilities / Assets
43rd percentile
Higher debt load relative to assets than 43% of similar nonprofits.
National Urea Cycle Disorders Foundation
990 • Fiscal year 2020 • EIN 41-1661444
Siviq Scores
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
0.02x
Liabilities / Revenue
66th percentile
Higher debt load relative to revenue than 66% of similar nonprofits.
Net Margin
7th percentile
Higher net margin than 7% of similar nonprofits.
Top Officer Pay
88th percentile
Higher top officer pay than 88% of similar nonprofits.
Top officer pay equals 78.7% of source-year revenue.
Asset Growth
19th percentile
Faster asset growth than 19% of similar nonprofits.
Revenue Growth
13th percentile
Faster revenue growth than 13% of similar nonprofits.
Balance Sheet
Assets
Down$999,699
Down $50,267 (-4.8%) from 2019
Net Assets
Down$978,866
Down $68,166 (-6.5%) from 2019
Liabilities
Up$20,833
Up $17,899 (+610%) from 2019
Revenue And Expenses
Revenue
Down$127,073
Down $93,845 (-42%) from 2019
Expenses
Down$195,240
Down $175,917 (-47%) from 2019
Net Income
Up-$68,167
Up $82,072 (+55%) from 2019
Historical Trend
Jump To
Filing Snapshot
- Filing Period
- Jan 1, 2020 to Dec 31, 2020
- Signed
- Nov 15, 2021
- Return Version
- 2020v4.0
- Gross Receipts
- $127,073
Mission and Program Overview
Mission
To save the lives & improve outcomes of individuals with urea cycle disorders (rare genetic inborn error of metabolism) by 1) driving & supporting critical research, 2) educating healthcare professionals on identification, diagnosis & treatment, 3)providing education information, resources & support to affected families & connecting those affected with support, 4) increasing publics awareness so no child or adult suffers or dies undiagnosed, 5) educating policy makers on the needs of affected individuals and families.
Save & improve lives of those affected by Urea Cycle Disorders, educating families & healthcare professionals on identification, diagnosis & treatment; stimulating & supporting research to improve quality of life and cure; increase awareness, info & support to all those affected by Urea Cycle Disorders.
Balance Sheet Detail
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Savings and Temporary Cash Investments | $827,708 | $866,067 | ▲ $38,359 |
| Cash and Non-Interest-Bearing Accounts | $221,940 | $133,632 | ▼ $88,308 |
| Land, Buildings, and Equipment, Net | $318 | - | - |
| Total Assets | $1,049,966 | $999,699 | ▼ $50,267 |
| Liabilities | |||
| Unsecured Notes Loans Payable | - | $20,833 | - |
| Accounts Payable and Accrued Expenses | $2,934 | - | - |
| Total Liabilities | $2,934 | $20,833 | ▲ $17,899 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $1,047,032 | $978,866 | ▼ $68,166 |
| Net Assets With Donor Restrictions | $0 | $0 | → $0 |
| Total Net Assets Fund Balance | $1,047,032 | $978,866 | ▼ $68,166 |
| Total Liabilities and Net Assets / Fund Balance | $1,049,966 | $999,699 | ▼ $50,267 |
Compensation and Service Providers
Employees
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Cynthia LeMons | Executive Directors | FT | $100,000 | $100,000 |
Board Members and Trustees
| Name | Title |
|---|---|
| Tresa Warner | President |
| Amanda Sonntag | Board Member |
| Lori Shockey | Board Member |
| Mary Alice O'Malley | Board Member |
| Eva Oseland | Secretary/Treasurer |
Revenue and Support
Revenue Composition
- Contributions and Grants
- $124,870
- Program Service Revenue
- $0
- Investment Income
- $2,203
- Other Revenue
- $0
- All Other Contributions
- $124,870
- Change in Net Assets
- $-68,167
Expenses and Functional Allocation
Major Expense Lines
| Line Item | Amount |
|---|---|
| Salaries, Compensation, and Employee Benefits | $108,084 |
| Other Expenses | $87,156 |
| Total Fundraising Expense | $2,542 |
| Grants and Similar Amounts Paid | $0 |
| Professional Fundraising Fees | $0 |
Functional Expense Allocation
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Current Officers, Directors, Trustees, and Key Employees | $85,000 | $13,000 | $2,000 | $100,000 |
| Fees for Services Other | $26,832 | $0 | $0 | $26,832 |
| Occupancy | $19,980 | - | - | $19,980 |
| Other Expenses | $9,198 | $188 | $0 | $9,386 |
| Information Technology | $8,477 | - | - | $8,477 |
| Payroll Taxes | $6,871 | $1,051 | $162 | $8,084 |
| Office Expenses | $4,128 | $274 | $184 | $4,586 |
| Insurance | $3,118 | $779 | - | $3,897 |
| Depreciation Depletion | - | $318 | - | $318 |
| Total Functional Expenses | $177,034 | $15,664 | $2,542 | $195,240 |
Fundraising, Events, and Gaming
- Fundraising activities
- No
- Gaming activities
- No
- Professional fundraiser used
- No
Fundraising and Gaming Totals
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
Political and Lobbying Activity
- Political campaign activity
- No
- Lobbying activity
- No
- Subject to proxy tax
- No
Governance and Compliance
Governance Checklist
- Compiled or reviewed by an accountant
- No
- Annual disclosure for covered persons
- Yes
- Backup withholding compliance
- Yes
- Business relationship with 35% controlled entity
- No
- Business relationship with family members
- No
- Business relationship with organization members
- No
- Material changes to governing documents
- No
- Compensation from other sources disclosed
- No
- CEO compensation reviewed
- Yes
- Other officer compensation reviewed
- Yes
- Conflict-of-interest policy
- Yes
- Audited financial statements prepared
- No
- Key decisions subject to board approval
- No
- Management duties delegated
- No
Governance Explanations
Form 990, Part VI, Section A, Line 2
“Eva Oseland and Cynthia LeMonds have a family relationship.”
Form 990, Part VI, Section B, Line 11B
“Form 990 emailed to Board of Directors prior to filing. Directors have the opportunity to request clarification or explanation from the Executive Director and/or Finance Officer.”
Form 990, Part VI, Section B, Line 12C
“Board of Directors and employees must complete a Conflict of Interest Declaration stating they had no conflicts or disclosing and identifying the nature of any conflicts and interested party transactions. By signing the Declaration, each declarer certifies they are required to scrutinize their transactions, outside business interest and relationships for potential conflicts on an ongoing basis and immediately report any such conflicts. In the event of such disclosure, the Board of Directors shall determine whether a conflict exists and in the case of existing conflict, determine whether or not such stated transaction may be authorized as reasonable by NUCDF.”
Form 990, Part VI, Section B, Line 15
“The executive committee as appropriate reviews comparable salaries from similar organizations and from recognized nonprofit compensation studies to determine appropriate salary ranges for executive director and key employees and report their findings with substantiation to the Board of Directors, along with any performance review of the Executive Director and/or new salary or benefits package proposals to be voted on. The process is recorded in the minutes of the Board of Directors.”
Form 990, Part VI, Section C, Line 19
“The Foundation makes it's conflict of interest policy, governing documents and financial statements available upon request.”
Filing and Contact Details
Filer
- Filer Name
- National Urea Cycle Disorders Foundation
- EIN
- 41-1661444
- Phone
- 6265780833
- Address
- 75 South Grand Avenue, Pasadena, CA 91105
Signing Officer
- Name
- Eva Oseland
- Title
- Secretary/Treasurer
- Phone
- 6265780833
- Signed
- 2021-11-15
Organization Details
- Principal Officer
- Eva Oseland
- Formed
- 1990
- Legal Domicile
- Mn
- Voting Board Members
- 6
- Independent Board Members
- 6
- Employees
- 1
- Volunteers
- 25
Supplemental Narrative
Additional Explanations
Form 990, Part IX, Line 11G
“Line 11g is Expense of Research/Project Coordinator $26832.00”
Form 990, Part XI, Line 9
“Change in net asset/fund balance due to fractions of cents rounding, equal to $1.00”
Raw XML Appendix390 raw XML fields
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
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| IRS990/Desc | 0 | Research,Science/Medicine Programs:1)NUCDF Fellowship Award attracts/supports new investigators in the field of urea cycle disorder research & clinical care; goal is to accelerate research & improve access to quality care. 2) Founding partner NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium. Research projects include natural history & neuroimaging studies, clinical trials for new treatments. NUCDF exec director serves as Consortium Co-Principal Investigator in key leadership role directly stimulating & developing research projects/protocols, engaging patient community, communicating research activities & progress to patient community & reducing barriers to patient participation in research. 3) Accelerates/supports international research, increases understanding of disorders/effects on brain function. Facilitates development/enrollment of clinical trials for new treatments/devices & validation of next-generation diagnostic and screening technologies. Strategic development & funding of neuroscience collaborations to accelerate research on effects of UCD on brain function & long-term health, development of treatments/interventions to prevent brain damage & improve cognitive function. 4) IRB-approved International UCD Patient-Reported Registry collects natural history/outcome data to accelerate research & understand QOL issues, identify unmet patient needs/issues for research. 5) CureUCD eclinical Therapeutic Discovery Lab: model project to validate potential treatments & accelerate development of clinical trials. |
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| IRS990/MissionDesc | 0 | To save the lives & improve outcomes of individuals with urea cycle disorders (rare genetic inborn error of metabolism) by 1) driving & supporting critical research, 2) educating healthcare professionals on identification, diagnosis & treatment, 3)providing education information, resources & support to affected families & connecting those affected with support, 4) increasing publics awareness so no child or adult suffers or dies undiagnosed, 5) educating policy makers on the needs of affected individuals and families. |
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| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | Advocacy, Education & Awareness Programs 1) Advocacy partnerships, policy & programs to benefit UCD patient community & rare disease community at large. 2) NUCDF websites serve as vital portals & lifelines to provide credible information & educational resources to healthcare professionals, affected families/patients & public, facilitate communication & support mechanisms. Programs facilitate identification, diagnosis/treatment for over 200 new families/yr. 3) Multiple portals facilitate e-communications & support network for over 2000 healthcare professionals & affected families in over 40 countries. 4) Patient & medical professional education programs include webcasts/webinars, Annual Family Conference, international scientific symposia, speakers bureau, Grand Rounds & symposium presentations, educational seminars for medical professionals, CheckAmmonia.com education website for healthcare professionals. 5) Awareness activities include annual events (Rare Disease Day, Cure the Cycle Challenge), educational booths at medical society conferences, targeted media to increase identification of undiagnosed patients, educate/inform public & med professionals about prevalence, early identification, risks, etc. 6) Publications, educational materials, guides, resource library, research & news briefs available in wide variety of formats through website, listserv, online community, exhibits and other rare disease community. |
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| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | NUCDF Patient and Family Support Programs 1) Serve as lifelines to families & affected individuals worldwide in need of information peer-to-peer support to families and patients struggling with new diagnosis, facing medical crises, or in need of resources or emotional support. Connects affected families together for support. Actively serves over 1300 families and medical professionals. 2) Maintains moderated private online support community with groups, discussions, educational/informational videos, forums, blogs. 3) NUCDF Family Conference, local "meet-ups" & networking activities connect families for support and provide credible information to improve outcomes. Connects affected patients & families with world-renowed medical experts, latest research/treatment information not available anywhere else. Conference provides opportunities for patients and families to participate in research studies conducted at conference. 4) Online meetings/webcasts/webinars provide information to increase understanding of the disorder, treatment and management, and educate community about research activities. |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | Eva Oseland and Cynthia LeMonds have a family relationship. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | Form 990 emailed to Board of Directors prior to filing. Directors have the opportunity to request clarification or explanation from the Executive Director and/or Finance Officer. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | Board of Directors and employees must complete a Conflict of Interest Declaration stating they had no conflicts or disclosing and identifying the nature of any conflicts and interested party transactions. By signing the Declaration, each declarer certifies they are required to scrutinize their transactions, outside business interest and relationships for potential conflicts on an ongoing basis and immediately report any such conflicts. In the event of such disclosure, the Board of Directors shall determine whether a conflict exists and in the case of existing conflict, determine whether or not such stated transaction may be authorized as reasonable by NUCDF. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | The executive committee as appropriate reviews comparable salaries from similar organizations and from recognized nonprofit compensation studies to determine appropriate salary ranges for executive director and key employees and report their findings with substantiation to the Board of Directors, along with any performance review of the Executive Director and/or new salary or benefits package proposals to be voted on. The process is recorded in the minutes of the Board of Directors. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | The Foundation makes it's conflict of interest policy, governing documents and financial statements available upon request. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | Line 11g is Expense of Research/Project Coordinator $26832.00 |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | Change in net asset/fund balance due to fractions of cents rounding, equal to $1.00 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990, Part VI, Section A, Line 2 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990, Part VI, Section B, Line 11b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Form 990, Part VI, Section B, Line 12c |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990, Part VI, Section B, Line 15 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | Form 990, Part VI, Section C, Line 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | Form 990, Part IX, Line 11g |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | Form 990, Part XI, Line 9 |
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| ReturnHeader/BuildTS | 0 | 2022-09-23 18:48:47Z |
| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | Eva Oseland |
| ReturnHeader/BusinessOfficerGrp/PersonTitleTxt | 0 | Secretary/Treasurer |
| ReturnHeader/BusinessOfficerGrp/PhoneNum | 0 | 6265780833 |
| ReturnHeader/BusinessOfficerGrp/SignatureDt | 0 | 2021-11-15 |
| ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt | 0 | NATIONAL UREA CYCLE DISORDERS FOUNDATION |
| ReturnHeader/Filer/BusinessNameControlTxt | 0 | NATI |
| ReturnHeader/Filer/EIN | 0 | 411661444 |
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| ReturnHeader/ReturnTs | 0 | 2021-11-15T01:53:24-07:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990 |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2020-01-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2020-12-31 |
| ReturnHeader/TaxYr | 0 | 2020 |
Document Assets
No mirrored PDF or thumbnail assets are attached yet.
Filings
Displayed year
2020 • Form 990Detailed filing. Detailed filing data is available for this year.
- Assets
- $999,699
- Liabilities
- $20,833
- Net assets
- $978,866
- Revenue
- $127,073
- Expenses
- $195,240
- Net income
- -$68,167