NATIONAL UREA CYCLE DISORDERS FOUNDATION

EIN: 411661444 501(c)(3) Health Care

Pasadena, CA

Total Revenue
$518,249
Total Expenses
$193,381
Total Assets
$1,162,732
Net Assets
$1,146,196
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1990
Legal Domicile
MN
Principal Officer
Eva Oseland
Phone
6265780833
Tax Period
2023-01-01 to 2023-12-31

NATIONAL UREA CYCLE DISORDERS FOUNDATION, founded in 1990, is a small nonprofit in the Health Care sector that reported $518K in total revenue in fiscal year 2023. Revenue surged 438% from the prior year, signaling strong growth momentum. The organization ran a surplus of $325K, a strong 63% operating margin.

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.

Program Service Accomplishments

Program 1
Expenses: $84,653 Revenue: $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...

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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.

Program 2
Expenses: $67,722 Revenue: $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 &...

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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.

Program 3
Expenses: $16,931 Revenue: $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...

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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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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $517,831
Program Service Revenue $0
Investment Income $418
Other Revenue $0
TOTAL REVENUE $518,249

Expense Breakdown

Grants Paid $0
Salaries & Benefits $84,952
Fundraising Expenses $1,370
Program Expenses $169,306
Other Expenses $108,429
TOTAL EXPENSES $193,381

Year-over-Year Comparison

2023 2022 Change
Revenue $518,249 $96,373 +4.4%
Expenses $193,381 $194,539 0.0%
Net Income $324,868 $-98,166 -4.3%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Liquidity & Cash Position

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Governance

Voting Members
5
Independent Members
3
Employees
2
Volunteers
4

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
2
$51,319
Total Directors
5
$51,319
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Tresa Warner President 30
Officer Director
$45,000 $0 $45,000
Eva Oseland Secretary/Treasurer 25
Officer Director
$6,319 $0 $6,319
Amanda Sonntag Board Member 1
Director
$0 $0 $0
Lori Shockey Board Member 1
Director
$0 $0 $0
Mary Alice O'Malley Board Member 1
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 No data No data No data No data
2023 $518,249 $193,381 $1,162,732 $324,868
2022 $96,373 $194,539 $821,328 $-98,166
2021 $115,207 $174,579 $922,408 $-59,372
2020 $127,073 $195,240 $999,699 $-68,167
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