National Urea Cycle Disorders Foundation
- Assets
- $922.4k
- Revenue
- $115.2k
- Investments
- $0.0
- Employees
- 1
- Location
- Pasadena, CA
- Founding
- 04/1996
- Data as of
- 12/2021
- EIN
- 41-1661444
Organization Overview
National Urea Cycle Disorders Foundation is located in Pasadena, CA. The organization was established in 1996. According to its NTEE Classification (E99) the organization is classified as: Health Care N.E.C., under the broad grouping of Health Care and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Urea Cycle Disorders Foundation is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2021, National Urea Cycle Disorders Foundation generated $115.2k in total revenue. This represents a relatively dramatic decline in revenue. Over the past 7 years, the organization has seen revenues fall by an average of (13.5%) each year. All expenses for the organization totaled $174.6k during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (5.2%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
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.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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.
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.
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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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Cynthia Lemons Executive Directors | OfficerTrustee | 60 | $100,000 |
Tresa Warner President | OfficerTrustee | 8 | $0 |
Eva Oseland Secretary/treasurer | OfficerTrustee | 25 | $0 |
Amanda Sonntag Board Member | Trustee | 1 | $0 |
Lori Shockey Board Member | Trustee | 1 | $0 |
Mary Alice O'malley Board Member | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $20,833 |
| All other contributions, gifts, grants, and similar amounts not included above | $92,877 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $113,710 |
| Total Program Service Revenue | $0 |
| Investment income | $1,497 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $115,207 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $100,000 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $8,049 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $0 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $9,821 |
| Advertising and promotion | $0 |
| Office expenses | $3,893 |
| Information technology | $7,726 |
| Royalties | $0 |
| Occupancy | $18,263 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $3,805 |
| All other expenses | $0 |
| Total functional expenses | $174,579 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $56,674 |
| Savings and temporary cash investments | $865,734 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $922,408 |
| Accounts payable and accrued expenses | $2,914 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $2,914 |
| Net assets without donor restrictions | $919,494 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $922,408 |
Grants Recieved
Over the last fiscal year, we have identified 1 grants that National Urea Cycle Disorders Foundation has recieved totaling $887.
| Awarding Organization | Amount |
|---|---|
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $887 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Apla Health & Wellness Los Angeles, CA | $40,810,614 | $66,394,497 |
University Clinical Education & Research Associates Honolulu, HI | $34,376,733 | $53,046,336 |
Southwest Network Phoenix, AZ | $17,764,386 | $38,761,918 |
Neighborhood Health Center Portland, OR | $27,154,161 | $29,235,957 |
California Primary Care Association Sacramento, CA | $11,309,164 | $14,655,608 |
Homeless Prenatal Program Inc San Francisco, CA | $24,624,994 | $19,931,597 |
Ufw Foundation Los Angeles, CA | $8,010,755 | $14,069,050 |
Native Health Phoenix, AZ | $14,068,043 | $20,218,525 |
Access To Healthcare Network Inc Reno, NV | $8,319,862 | $17,490,060 |
Working Partnerships Usa San Jose, CA | $7,685,088 | $14,971,452 |
Memorial Medical Center Foundation Long Beach, CA | $273,488,586 | $15,793,957 |
Easterseals Northern California Walnut Creek, CA | $3,933,873 | $11,091,029 |