Adnp Kids Research Foundation
- Assets
- $367.6k
- Revenue
- $1.1m
- Investments
- $0.0
- Employees
- 0
- Location
- Brush Prairie, WA
- Founding
- 03/2017
- Data as of
- 05/2022
- EIN
- 30-0964243
Organization Overview
Adnp Kids Research Foundation is located in Brush Prairie, WA. The organization was established in 2017. According to its NTEE Classification (H11) the organization is classified as: Single Organization Support, under the broad grouping of Medical Research and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Adnp Kids Research 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 05/2022, Adnp Kids Research Foundation generated $1.1m in total revenue. All expenses for the organization totaled $950.0k during the year ending 05/2022.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
RARE DISEASE SUPPORT, PATIENT ADVOCACY, EDUCATION, AND SCIENTIFIC RESEARCH AND FUNDING TREATMENT STUDIES AND DRUG TRIALS FOR ADNP SYNDROME
Describe the Organization's Program Activity:
Part 3 - Line 4a
OUR LARGEST ACCOMPLISHMENT THIS YEAR WAS THE FIRST INSTALLMENT PAYMENT FOR A 3-YEAR $4-MILLION DOLLAR CURATIVE "GENE THERAPY PROJECT", WHICH IS A COLLABORATIVE PROJECT WITH 3 LABS AT UC DAVIS AND THE MIND INSTITUTE. THIS PROJECT INCLUDES THE DEVELOPMENT AND CHARACTERIZATION OF ADNP MICE AND IPCS NEURONAL LINES. THIS INCLUDES THE INVESTIGATION, TESTING AND DEVELOPMENT OF EPIGENETIC GENE EDITING AND GENE THERAPY TREATMENTS TO THE IND LEVEL.
OUR SECOND LARGEST ACCOMPLISHMENT IS A COLLABORATIVE ONGOING PROJECT WITH 12 OTHER RARE NEURODEVELOPMENTAL GENETIC DISORDERS. THIS IS A HIGH THROUGHPUT SCREENING PROJECT WHERE THE GROUP WILL USE AI AND RUN ALL FDA APPROVED DRUGS AND NON APPROVED DRUGS THROUGH THEIR SYSTEM TO LOOK FOR POSSIBLE REPURPOSED DRUG CANDIDATES FOR ADNP SYNDROME. ONCE FOUND, THESE ARE THEN TESTED ON CHARACTERIZED IPSC LINES. RAREBASE, THE SCREENING PLATFORM WAS $150,000 AND THE BEGINNING STAGES OF PATIENT DERIVED IPSC LINES FOR THIS PROJECT WAS $5223.10, WITH ADDITIONAL COSTS NEXT YEAR.
OUR 3RD LARGEST ACCOMPLISHMENT WAS THE FINALIZATION OF DATA FOR THE PHASE 2A DRUG TRIAL COMPLETED LAST YEAR, AND THE DEVELOPMENT AND SUBMISSION OF THE MEDICAL PUBLICATION ON THE PHASE 2A TRIAL. IT ALSO INCLUDES THE DEVELOPMENT OF THE PHASE 2B TRIAL DESIGN AND SUBMISSION.
OUR 4TH AND FINAL ACCOMPLISHMENT IS THE 2ND YEAR OF OUR ONLINE WEBSITE PLATFORM OF THE WORLDS ONLY ADNP CONTACT REGISTRY, WHICH IS DONE THROUGH A HIPPA COMPLIANT PLATFORM THAT WE PURCHASE THROUGH SURVEY MONKEY, THE LINK CAN BE FOUND ON OUR WEBSITE. IN ADDITION, THIS INCLUDES THE PLATFORM DESIGN AND IRB APPROVAL OF A NEW PATIENT REGISTRY WHICH WILL START OUR LONGITUDINAL NATURAL HISTORY STUDY. THIS PLATFORM IS IN THE SOFT LAUNCH PHASE.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Sandra Sermone 30 | Officer | 0 | $0 |
Genie Egerton-Warburton Vice President | Officer | 0.25 | $0 |
Tim Mosier Treasurer | Officer | 0.25 | $0 |
Debbie Abraham Secretary | Officer | 0.25 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,145,983 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,145,983 |
| Total Program Service Revenue | $0 |
| Investment income | $0 |
| 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 | $1,145,983 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $938,352 |
| 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 | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $0 |
| 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 | $0 |
| Advertising and promotion | $0 |
| Office expenses | $1,251 |
| Information technology | $3,375 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $4,438 |
| 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 | $2,545 |
| All other expenses | $0 |
| Total functional expenses | $949,961 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $367,605 |
| Savings and temporary cash investments | $0 |
| 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 | $367,605 |
| Accounts payable and accrued expenses | $0 |
| 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 | $0 |
| Net assets without donor restrictions | $367,605 |
| 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 | $367,605 |
Grants Awarded
Over the last fiscal year, Adnp Kids Research Foundation has awarded $925,409 in support to 3 organizations.
| Grant Recipient | Amount |
|---|---|
Davis, CA PURPOSE: 1st installment payment for a gene therapy multi lab collaborative project. Sponsorship agreement is for 3 years and will cost $4-million dollars, | $750,000 |
RAREBASE PURPOSE: Rare disease drug development platform, to identify candidate drugs and drug targets based on a combination of high-throughput screening, stem cell biology and next generation sequencing. | $150,000 |
New York, NY PURPOSE: Ongoing project work for phase 2a drug trial, disseminate data, write medical publication and submission. Additional next phase 2b drug trail design and submission work. | $25,409 |
Grants Recieved
Over the last fiscal year, we have identified 4 grants that Adnp Kids Research Foundation has recieved totaling $11,905.
| Awarding Organization | Amount |
|---|---|
Goldman Sachs Philanthropy Fund New York, NY PURPOSE: MEDICAL / PUBLIC SERVICES | $10,000 |
The Geaton And Joann Decesaris Family Foundation Inc Davidsonville, MD PURPOSE: CHARITY | $1,000 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $805 |
Jp Morgan Chase Foundation New York, NY PURPOSE: GENERAL OPERATING SUPPORT | $100 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Adnp Kids Research Foundation Brush Prairie, WA | $367,605 | $1,145,983 |
Friends Of Fsh Research Kirkland, WA | $688,663 | $480,838 |
Marvin Thomas Memorial Seattle, WA | $37,958 | $135,347 |
Foundation Of The Chidrens Cancer Association Portland, OR | $1,674,804 | $366,841 |
Southern Oregon Foundation Supporting A Cure For Cancer Medford, OR | $28,882 | $79,871 |
Ghost Tree Invitational Ltd Eugene, OR | $128,939 | $91,651 |