Totals
- Total revenue
- $8,819,830
- Total expenses
- $9,646,034
- Contributions and grants received
- $8,184,664
- Grants paid
- $3,153,559
- Program service revenue
- $0
- Investment income
- $652,841
- Other revenue
- -$17,675
- Total assets, end of year
- $34,638,627
- Total liabilities, end of year
- $940,318
- Net assets or fund balances, end of year
- $33,698,309
- Program services expenses (Part IX)
- $6,960,942
- Management and general expenses
- $1,669,390
- Fundraising expenses
- $1,015,702
- Program service expenses (Part III)
- $6,960,942
Program services were 72.2% 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
$1,737,326
-
1f · All other contributions, gifts and grants
$6,447,338
-
1g · Noncash contributions included above
$288,713
-
2f · All other program service revenue
total $0 · related or exempt $0 · unrelated business $0 · excluded $0
-
3 · Investment income
total $920,478 · excluded $920,478
-
6c · Rental income or loss
real property $0 · personal property $0
-
7a · Gross sales of assets other than inventory
securities $7,306,130 · other assets $22,401
-
7b · Less cost or other basis and sales expenses
securities $7,543,068 · other assets $53,100
-
7c · Gain or loss
securities -$236,938 · other assets -$30,699
-
7d · Net gain or loss
total -$267,637 · excluded -$267,637
-
8a · Fundraising events: gross income
$44,108
-
8a · Fundraising events: contributions included on line 1c
$1,737,326
-
8b · Fundraising events: direct expenses
$76,794
-
8c · Net income from fundraising events
total -$32,686 · excluded -$32,686
-
11a · Other revenue: MISCELLANEOUS REVENUE
total $15,011 · excluded $15,011
-
11d · All other revenue
total $0 · related or exempt $0 · unrelated business $0 · excluded $0
-
11e · Other revenue, total
$15,011
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $2,853,559 · program services $2,853,559
-
3 · Grants to foreign organizations and individuals
total $300,000 · program services $300,000
-
5 · Compensation of officers, directors and key employees
total $1,186,068 · program services $486,844 · management and general $326,013 · fundraising $373,211
-
7 · Other salaries and wages
total $1,902,669 · program services $1,292,147 · management and general $392,106 · fundraising $218,416
-
8 · Pension plan contributions
total $195,141 · program services $133,885 · management and general $38,118 · fundraising $23,138
-
9 · Other employee benefits
total $415,502 · program services $260,020 · management and general $89,967 · fundraising $65,515
-
10 · Payroll taxes
total $201,847 · program services $118,254 · management and general $49,180 · fundraising $34,413
-
11b · Fees: legal
total $50,020 · program services $20,508 · management and general $29,512
-
11c · Fees: accounting
total $76,555 · management and general $76,555
-
11d · Fees: lobbying
total $170,572 · program services $170,572
-
11e · Fees: professional fundraising services
total $44,667 · fundraising $44,667
-
11f · Fees: investment management
total $108,427 · management and general $108,427
-
11g · Fees: other
total $381,736 · program services $297,515 · management and general $43,693 · fundraising $40,528
-
12 · Advertising and promotion
total $487,026 · program services $393,116 · fundraising $93,910
-
13 · Office expenses
total $119,244 · program services $97,085 · management and general $13,205 · fundraising $8,954
-
14 · Information technology
total $567,373 · program services $213,986 · management and general $301,857 · fundraising $51,530
-
16 · Occupancy
total $68,256 · management and general $68,256
-
17 · Travel
total $144,124 · program services $93,545 · management and general $31,563 · fundraising $19,016
-
19 · Conferences, conventions and meetings
total $177,022 · program services $114,898 · management and general $38,768 · fundraising $23,356
-
20 · Interest
total $693 · management and general $693
-
22 · Depreciation, depletion and amortization
total $89,164 · program services $80,249 · management and general $7,211 · fundraising $1,704
-
23 · Insurance
total $35,304 · program services $26,712 · management and general $4,541 · fundraising $4,051
-
24a · Other expenses: DUES & SUBSCRIPTIONS
total $33,174 · program services $8,047 · management and general $11,834 · fundraising $13,293
-
24b · Other expenses: MISCELLANEOUS
total $30,384 · management and general $30,384
-
24c · Other expenses: BANK & CREDIT CARD FEES
total $7,507 · management and general $7,507
-
24e · All other expenses
total $0 · program services $0 · management and general $0 · fundraising $0
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $450,811 · end of year $1,704,138
-
2 · Savings and temporary cash investments
beginning of year $6,353,737 · end of year $6,037,910
-
3 · Pledges and grants receivable
beginning of year $5,192,119 · end of year $3,934,513
-
4 · Accounts receivable
beginning of year $169,516 · end of year $15,423
-
5 · Loans and receivables from officers and key people
beginning of year $0 · end of year $0
-
6 · Loans and receivables from disqualified persons
beginning of year $0 · end of year $0
-
9 · Prepaid expenses and deferred charges
beginning of year $317,235 · end of year $157,031
-
10a · Land, buildings and equipment: cost or other basis
$788,075
-
10b · Land, buildings and equipment: accumulated depreciation
$337,879
-
10c · Land, buildings and equipment, net
beginning of year $373,477 · end of year $450,196
-
11 · Investments: publicly traded securities
beginning of year $19,152,360 · end of year $20,610,752
-
12 · Investments: other securities
beginning of year $870,695 · end of year $1,521,390
-
13 · Investments: program-related
beginning of year $0
-
15 · Other assets
beginning of year $223,466 · end of year $207,274
-
17 · Accounts payable and accrued expenses
beginning of year $387,634 · end of year $740,452
-
22 · Loans and payables to officers and key people
beginning of year $0 · end of year $0
-
25 · Other liabilities
beginning of year $274,841 · end of year $199,866
-
27 · Net assets without donor restrictions
beginning of year $16,800,207 · end of year $18,593,893
-
28 · Net assets with donor restrictions
beginning of year $15,640,734 · end of year $15,104,416
Mission and programs · 2023
Mission
WE GIVE HOPE. WE FUND RESEARCH, ADVOCATE FOR PATIENTS, AND BUILD A COMMUNITY FOR ALL IMPACTED BY PKD.
-
RESEARCH - SEE SCHEDULE O
Expenses $3,760,403 · Grants $3,153,559
-
AWARENESS AND ADVOCACY - SEE SCHEDULE O
Expenses $1,897,372
-
EDUCATION AND SUPPORT - SEE SCHEDULE O
Expenses $1,303,167
As filed on the 2023 return.
Listed in Part VII
-
Amanda YenAMANDA YEN
DIRECTOR/SECRETARY
- Total calculated
- $0
- Hours/week
- 1
-
Chris WessCHRIS WESS
DIRECTOR/VICE CHAIR
- Total calculated
- $0
- Hours/week
- 1
-
Navin ManglaniNAVIN MANGLANI
DIRECTOR/CHAIR
- Total calculated
- $0
- Hours/week
- 1
-
Stu CaplanSTU CAPLAN
DIRECTOR/TREASURER
- Total calculated
- $0
- Hours/week
- 1
-
Susan BushnellSUSAN BUSHNELL
CHIEF EXECUTIVE OFFICER
- Total calculated
- $355,035
- From this org
- $252,564
- From related orgs
- $0
- Other
- $102,471
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $241,167
- Bonus
- $11,042
- Other
- $355
- Deferred
- $58,844
- Nontaxable benefits
- $43,627
- Filer's total
- $355,035
-
Alix PiccirilliALIX PICCIRILLI
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Debora PlunkettDEBORA PLUNKETT
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Foaud T Chebib MD FasnFOAUD T CHEBIB MD FASN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Glenn FrommerGLENN FROMMER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Julie MarshallJULIE MARSHALL
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Meyeon ParkMEYEON PARK
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Michael HaggardMICHAEL HAGGARD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Shawna WebbSHAWNA WEBB
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Visha Patel MDVISHA PATEL MD
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Carmen GleasonCARMEN GLEASON
CHIEF OPERATIONS OFFICER
- Total calculated
- $310,637
- From this org
- $235,661
- From related orgs
- $0
- Other
- $74,976
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $216,017
- Bonus
- $19,500
- Other
- $144
- Deferred
- $35,956
- Nontaxable benefits
- $39,020
- Filer's total
- $310,637
-
Craig RobertsonCRAIG ROBERTSON
CHIEF GROWTH OFFICER
- Total calculated
- $158,030
- From this org
- $115,872
- From related orgs
- $0
- Other
- $42,158
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $115,644
- Bonus
- $0
- Other
- $228
- Deferred
- $22,427
- Nontaxable benefits
- $19,731
- Filer's total
- $158,030
-
Matthew BeckaMATTHEW BECKA
CHIEF RESEARCH OFFICER
- Total calculated
- $170,643
- From this org
- $118,733
- From related orgs
- $0
- Other
- $51,910
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $111,146
- Bonus
- $7,500
- Other
- $87
- Deferred
- $12,137
- Nontaxable benefits
- $39,773
- Filer's total
- $170,643
-
Desiree WhiteDESIREE WHITE
VP OF INFORMATION SYSTEMS
- Total calculated
- $131,853
- From this org
- $111,461
- From related orgs
- $0
- Other
- $20,392
- Hours/week
- 40
-
Elise HooverELISE HOOVER
DIRECTOR OF RESEARCH
- Total calculated
- $134,995
- From this org
- $123,043
- From related orgs
- $0
- Other
- $11,952
- Hours/week
- 40
-
Krystn KuckelmanKRYSTN KUCKELMAN
VP OF COMMUNITY DEVELOPMENT
- Total calculated
- $216,032
- From this org
- $135,288
- From related orgs
- $0
- Other
- $80,744
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $135,040
- Bonus
- $0
- Other
- $248
- Deferred
- $48,708
- Nontaxable benefits
- $32,036
- Filer's total
- $216,032
-
Jonathan RichJONATHAN RICH
CHIEF DEVELOPMENT OFFICER
- Total calculated
- $189,698
- From this org
- $179,548
- From related orgs
- $0
- Other
- $10,150
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $83,914
- Bonus
- $0
- Other
- $95,634
- Deferred
- $0
- Nontaxable benefits
- $10,150
- Filer's total
- $189,698
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 committee
- 3 · Written employment contract
- 3 · Compensation survey or study
- 3 · Approval by the board or compensation committee
- 4a · Severance or change-of-control payment
Answered no
- 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
The filer's explanations (Part III)
- Schedule J, Part I, Line 4a Severance or change-of-control payment
- THE FOLLOWING SEVERANCE PAYMENTS WERE MADE DURING THE YEAR: JONATHAN RICH $95,330
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
-
RESEARCH GRANT / INVESTIGATOR GRANT / FELLOWSHIP
-
$287,000
FELLOWSHIP / RESEARCH GRANT / CARE CENTER GRANT
-
$260,000
RESEARCH GRANT / INVESTIGATOR GRANT / CORE GRANT / CARE CENTER GRANT / FELLOWSHIP
-
University of Alabama at Birmingham
$160,000
RESEARCH GRANT
-
$140,000
RESEARCH GRANT / FELLOWSHIP
-
University of Maryland Baltimore
$140,000
RESEARCH GRANT / CARE CENTER GRANT
-
INVESTIGATOR GRANT
-
National Institutes of Health
$80,000
RESEARCH GRANT
-
RESEARCH GRANT
-
University of Arizona
$80,000
RESEARCH GRANT
The 10 largest by cash amount. The API serves every itemized grant.
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 16 April 2025
- IRS schema version
- 2023v6.0
- Source object
- 202521069349301007
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
The source document this was parsed from is served over the API, which is where bulk and document access live.