National Pku Alliance Inc
- Assets
- $4.8m
- Revenue
- $1.3m
- Investments
- $100.0k
- Employees
- 9
- Location
- New York, NY
- Founding
- 02/2009
- Data as of
- 12/2023
- EIN
- 26-2849140
Organization Overview
National Pku Alliance Inc is located in New York, NY. The organization was established in 2009. According to its NTEE Classification (H25) the organization is classified as: Down Syndrome Research, under the broad grouping of Medical Research and related organizations. As of 12/2023, National Pku Alliance Inc employed 9 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Pku Alliance Inc 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 12/2023, National Pku Alliance Inc generated $1.3m in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 3.6% each year. All expenses for the organization totaled $1.9m during the year ending 12/2023. While expenses have increased by 12.3% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, National Pku Alliance Inc has awarded 46 individual grants totaling $3,440,363. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE NPKUA PATIENT REGISTRY IS A SECURE DATABASE THAT IS DESIGNED TO COLLECT HEALTH INFORMATION TO HELP RESEARCHERS, CLINICIANS AND THE NPKUA BETTER UNDERSTAND THE PATIENT EXPERIENCE WITH PKU. THE REGISTRY PROVIDES AN ASSESSMENT OF PEOPLE WITH PKU INCLUDING GENOTYPES, PHENYLALANINE LEVELS AND OTHER HEALTH DATA.DURING 2023, THE REGISTRY SUPPORTED RECRUITMENT FOR 9 ACADEMIC AND INDUSTRY STUDIES. THE NPKUA COLLABORATED WITH OVER 10 INDUSTRY AND ACADEMIC PARTNERS TO SUPPORT PRODUCT DEVELOPMENT AND RESEARCH OF NOVEL PKU TREATMENTS AND THERAPIES.THE NPKUA PRESENTED REGISTRY DATA AND/OR BEST PRACTICES FOR MANAGING PATIENT REGISTRIES AT 5 LARGE CONFERENCES AND MEETINGS.
AWARDED $550,000 ACROSS 5 GRANTS THAT SUPPORTED 3 RESEARCHERS IN 2023 AND 5 IN 2024. THE RESEARCH PROJECTS FOCUS ON IMPROVING PSYCHOLOGICAL ASSESSMENTS FOR PKU PATIENTS, AS WELL AS PKU TREATMENTS AND THERAPIES AND PATH TO A CURE. $415,304 WAS FUNDED IN 2023, WITH THE BALANCE PAID IN 2024.
THE NPKUA HELD ITS FIRST MULTIDISCIPLINARY SCIENCE CONFERENCE, "BREAK FREE FROM PHE", IN 2023. THIS UNIQUE CONFERENCE INCLUDED 80 RESEARCHERS, CLINICIANS AND INDUSTRY PARTICIPANTS IN A COLLABORATIVE FORUM TO FURTHER THE DEVELOPMENT OF TREATMENTS FOR PKU. THE OBJECTIVES WERE TO INFORM CLINICAL ENDPOINTS FOR DRUG DEVELOPMENT CLINICAL TRIALS.
IN 2023, THE NPKUA HIRED A DIRECTOR OF COMMUNITY ENGAGEMENT. THE DIRECTOR IS RESPONSIBLE FOR PLANNING AND MANAGING PROGRAMS FOR THE PKU COMMUNITY, INCLUDING A MENTORING PROGRAM, COMMUNITY CALLS, ADVOCACY EFFORTS AND A VOLUNTEER PROGRAM.THE DIRECTOR SCHEDULES, MANAGES AND ATTENDS VIRTUAL CALLS WITH THE COMMUNITY ACROSS DIFFERENT PKU AGE GROUPS AND PKU CAREGIVER TYPES. 42 CALLS WERE HELD IN 2023.THE NPKUA VOLUNTEER GROUP CONTINUES TO BE A SOURCE OF SUPPORT AS WE CALL ON MEMBERS TO PROVIDE FEEDBACK, SUPPORT SIGNIFICANT PROJECTS AND PLAN FOR FUTURE ENDEAVORS AND EVENTS.LASTLY, THE ADVOCACY COMMITTEE WORKS ALONGSIDE MEMBERS OF THE BROADER RARE DISEASE COMMUNITY TO ADVANCE EFFORTS AROUND NUTRITION, EQUITY AND OTHER PRIORITIES OF THE PKU COMMUNITY.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Lisa Milberg Executive Director | Officer | 40 | $225,000 |
Susie Gray Director Of Development | 40 | $135,776 | |
Rhonda Connolly President | OfficerTrustee | 10 | $0 |
Elizabeth Aselage Vice President | OfficerTrustee | 5 | $0 |
Alison Reynolds Secretary | OfficerTrustee | 5 | $0 |
Adam Sherman Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $876,269 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $637,011 |
| Noncash contributions included in lines 1a–1f | $154,674 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,513,280 |
| Total Program Service Revenue | $13,500 |
| Investment income | $103,854 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $39,603 |
| Net Income from Fundraising Events | -$369,414 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,305,823 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $423,501 |
| 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. | $230,850 |
| Compensation of current officers, directors, key employees. | $76,942 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $355,700 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $11,084 |
| Payroll taxes | $40,597 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $20,596 |
| Fees for services: Accounting | $76,166 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $17,003 |
| Fees for services: Other | $405,483 |
| Advertising and promotion | $0 |
| Office expenses | $61,285 |
| Information technology | $22,320 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $47,216 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $143,524 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $3,262 |
| All other expenses | $2,622 |
| Total functional expenses | $1,874,560 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $397,925 |
| Savings and temporary cash investments | $407,774 |
| Pledges and grants receivable | $2,750 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $155,524 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $65,883 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $3,626,882 |
| Investments—other securities | $100,000 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $4,756,738 |
| Accounts payable and accrued expenses | $78,014 |
| Grants payable | $0 |
| Deferred revenue | $82,226 |
| 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 | $160,240 |
| Net assets without donor restrictions | $4,555,310 |
| Net assets with donor restrictions | $41,188 |
| 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 | $4,756,738 |
Grants Awarded
Over the last fiscal year, National Pku Alliance Inc has awarded $415,304 in support to 4 organizations.
| Grant Recipient | Amount |
|---|---|
OREGON HEALTH AND SCIENCE UNIVERSITY PURPOSE: PKU RESEARCH | $189,652 |
UNIVERSITY OF PENNSYLVANIA PURPOSE: PKU RESEARCH | $50,000 |
UNIVERSITY OF SOUTHERN CALIFORNIA PURPOSE: PKU RESEARCH | $20,000 |
UNIVERSITY OF MISSOURI PURPOSE: PKU RESEARCH | $155,652 |