Totals
- Total revenue
- $1,305,823
- Total expenses
- $1,874,560
- Contributions and grants received
- $1,513,280
- Grants paid
- $423,501
- Program service revenue
- $13,500
- Investment income
- $143,457
- Other revenue
- -$364,414
- Total assets, end of year
- $4,756,738
- Total liabilities, end of year
- $160,240
- Net assets or fund balances, end of year
- $4,596,498
- Program services expenses (Part IX)
- $1,027,175
- Management and general expenses
- $477,612
- Fundraising expenses
- $369,773
- Program service expenses (Part III)
- $1,027,175
Program services were 54.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1c · Fundraising events
$876,269
-
1f · All other contributions, gifts and grants
$637,011
-
1g · Noncash contributions included above
$154,674
-
2a · Program service revenue: CONFERENCE FEES
total $13,500 · related or exempt $13,500
-
3 · Investment income
total $103,854 · excluded $103,854
-
7a · Gross sales of assets other than inventory
securities $593,391
-
7b · Less cost or other basis and sales expenses
securities $551,929 · other assets $1,859
-
7c · Gain or loss
securities $41,462 · other assets -$1,859
-
7d · Net gain or loss
total $39,603 · excluded $39,603
-
8a · Fundraising events: gross income
$205,396
-
8a · Fundraising events: contributions included on line 1c
$876,269
-
8b · Fundraising events: direct expenses
$574,810
-
8c · Net income from fundraising events
total -$369,414 · excluded -$369,414
-
11a · Other revenue: OTHER INCOME
total $5,000 · excluded $5,000
-
11e · Other revenue, total
$5,000
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $423,501 · program services $423,501
-
5 · Compensation of officers, directors and key employees
total $230,850 · program services $76,965 · management and general $76,942 · fundraising $76,943
-
7 · Other salaries and wages
total $355,700 · program services $145,586 · management and general $100,436 · fundraising $109,678
-
9 · Other employee benefits
total $11,084 · program services $1,969 · management and general $4,392 · fundraising $4,723
-
10 · Payroll taxes
total $40,597 · program services $9,396 · management and general $15,204 · fundraising $15,997
-
11b · Fees: legal
total $20,596 · management and general $20,596
-
11c · Fees: accounting
total $76,166 · management and general $76,166
-
11f · Fees: investment management
total $17,003 · management and general $17,003
-
11g · Fees: other
total $405,483 · program services $151,201 · management and general $109,335 · fundraising $144,947
-
13 · Office expenses
total $61,285 · program services $38,539 · management and general $11,373 · fundraising $11,373
-
14 · Information technology
total $22,320 · program services $756 · management and general $21,480 · fundraising $84
-
17 · Travel
total $47,216 · program services $36,107 · management and general $5,081 · fundraising $6,028
-
19 · Conferences, conventions and meetings
total $143,524 · program services $140,305 · management and general $3,219
-
23 · Insurance
total $3,262 · management and general $3,262
-
24a · Other expenses: BANK FEES
total $5,701 · management and general $5,701
-
24b · Other expenses: ORGANIZATIONAL (CORP) E
total $4,371 · management and general $4,371
-
24c · Other expenses: BOOKS, SUBSCRIPTIONS
total $2,850 · program services $2,850
-
24d · Other expenses: DUES
total $429 · management and general $429
-
24e · All other expenses
total $2,622 · management and general $2,622
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,208,353 · end of year $397,925
-
2 · Savings and temporary cash investments
beginning of year $340,810 · end of year $407,774
-
3 · Pledges and grants receivable
beginning of year $30,020 · end of year $2,750
-
4 · Accounts receivable
beginning of year $22,995 · end of year $0
-
7 · Other notes and loans receivable
end of year $155,524
-
9 · Prepaid expenses and deferred charges
beginning of year $12,370 · end of year $65,883
-
10a · Land, buildings and equipment: cost or other basis
$0
-
10b · Land, buildings and equipment: accumulated depreciation
$0
-
10c · Land, buildings and equipment, net
beginning of year $1,859 · end of year $0
-
11 · Investments: publicly traded securities
beginning of year $3,271,060 · end of year $3,626,882
-
12 · Investments: other securities
beginning of year $100,000 · end of year $100,000
-
17 · Accounts payable and accrued expenses
beginning of year $56,532 · end of year $78,014
-
19 · Deferred revenue
beginning of year $10,000 · end of year $82,226
-
27 · Net assets without donor restrictions
beginning of year $4,827,469 · end of year $4,555,310
-
28 · Net assets with donor restrictions
beginning of year $93,466 · end of year $41,188
Mission and programs · 2023
Mission
TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE.
-
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.
Expenses $150,112
-
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.
Expenses $120,737 · Revenue $13,500
-
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.
Expenses $72,084 · Grants $8,197
-
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.
Expenses $684,242 · Grants $415,304
As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Lisa MilbergLISA MILBERG
EXECUTIVE DIRECTOR
- Total calculated
- $230,850
- From this org
- $225,000
- From related orgs
- $0
- Other
- $5,850
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $215,000
- Bonus
- $10,000
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $5,850
- Filer's total
- $230,850
-
Susie GraySUSIE GRAY
DIRECTOR OF DEVELOPMENT
- Total calculated
- $141,454
- From this org
- $135,776
- From related orgs
- $0
- Other
- $5,678
- Hours/week
- 40
-
Rhonda ConnollyRHONDA CONNOLLY
PRESIDENT
- Total calculated
- $0
- Hours/week
- 10
-
Elizabeth AselageELIZABETH ASELAGE
VICE PRESIDENT
- Total calculated
- $0
- Hours/week
- 5
-
Alison ReynoldsALISON REYNOLDS
SECRETARY
- Total calculated
- $0
- Hours/week
- 5
-
Adam ShermanADAM SHERMAN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
David MickleDAVID MICKLE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Heidi MaxfieldHEIDI MAXFIELD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Lillian IsabellaLILLIAN ISABELLA
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Susan BerrySUSAN BERRY
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Jerry ElkinsJERRY ELKINS
PRESIDENT (THROUGH JUNE)
- Total calculated
- $0
- Hours/week
- 2
-
Brandon MorganBRANDON MORGAN
VP/TREASURER (THROUGH NOV)
- Total calculated
- $0
- Hours/week
- 2
-
Homayoon RafatijoHOMAYOON RAFATIJO
DIRECTOR (THROUGH JUNE)
- Total calculated
- $0
- Hours/week
- 1
-
Jeb HaberJEB HABER
DIRECTOR (THROUGH JUNE)
- Total calculated
- $0
- Hours/week
- 1
-
Leo Horey IIILEO HOREY III
DIRECTOR (THROUGH NOV)
- Total calculated
- $0
- Hours/week
- 1
-
Brittany HolmesBRITTANY HOLMES
DIRECTOR (THROUGH JUNE)
- Total calculated
- $0
- Hours/week
- 1
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.
Schedule J
Answered yes
- 3 · Compensation survey or study
- 3 · Approval by the board or compensation committee
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 5b · Pay contingent on a related organization's revenues
- 6a · Pay contingent on this organization's net earnings
- 6b · Pay contingent on a related organization's net earnings
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.
Grants on this return
-
OREGON HEALTH AND SCIENCE UNIVERSITY
$189,652
PKU RESEARCH
-
$155,652
PKU RESEARCH
-
$50,000
PKU RESEARCH
-
PKU RESEARCH
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 16 April 2024
- IRS schema version
- 2023v5.0
- Source object
- 202421109349301742
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