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WE GIVE HOPE. WE FUND RESEARCH, ADVOCATE FOR PATIENTS, AND BUILD A COMMUNITY FOR ALL IMPACTED BY PKD.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2023
Total Revenue
▼$8.8M
Program Spending
72%
of total expenses go to program services
Total Contributions
$8.2M
Total Expenses
▼$9.6M
Total Assets
$34.6M
Total Liabilities
▼$940.3K
Net Assets
$33.7M
Officer Compensation
→$1.2M
Other Salaries
$1.9M
Investment Income
$652.8K
Fundraising
▼$44.1K
Tax Year 2023 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $2.6M
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
| Kansas City, KS | $380K | Cash | RESEARCH GRANT / INVESTIGATOR GRANT / FELLOWSHIP | |
University of Colorado84-6000555 | Denver, CO | $287K | Cash | FELLOWSHIP / RESEARCH GRANT / CARE CENTER GRANT |
Mayo Clinic41-6011702 | Rochester, MN | $260K | Cash | RESEARCH GRANT / INVESTIGATOR GRANT / CORE GRANT / CARE CENTER GRANT / FELLOWSHIP |
University of Alabama at Birmingham63-6005396 | Birmingham, AL | $160K | Cash | RESEARCH GRANT |
Loyola University36-1408475 | Chicago, IL | $140K | Cash | RESEARCH GRANT / FELLOWSHIP |
University of Maryland Baltimore52-6002033 | Baltimore, MD | $140K | Cash | RESEARCH GRANT / CARE CENTER GRANT |
Icahn School of Medicine at Mount Sinai13-6171197 | New York, NY | $80K | Cash | INVESTIGATOR GRANT |
National Institutes of Health52-1847251 | Bethesda, MD | $80K | Cash | RESEARCH GRANT |
| Albany, NY | $80K | Cash | RESEARCH GRANT | |
University of Arizona74-2652689 | Tucson, AZ | $80K | Cash | RESEARCH GRANT |
Johns Hopkins University52-0595110 | Baltimore, MD | $80K | Cash | RESEARCH GRANT |
Michigan Technological University38-6005955 | Houghton, MI | $80K | Cash | RESEARCH GRANT |
Emory University58-0566256 | Atlanta, GA | $73K | Cash | CARE CENTER GRANT |
Children's National Medical Center52-1654453 | Washington, DC | $70K | Cash | CARE CENTER GRANT |
| New York, NY | $67.1K | Cash | COMMUNITY ENGAGEMENT GRANT / CARE CENTER GRANT | |
Swedish Medical Center Foundation91-0983214 | Seattle, WA | $67K | Cash | CARE CENTER GRANT |
Tufts Medical Center | Boston, MA | $65K | Cash | CARE CENTER GRANT |
Mayo Clinic Jacksonville59-3337028 | Jacksonville, FL | $65K | Cash | CARE CENTER GRANT |
REGENTS OF THE UNIV OF CALI - UC SAN DIEGO95-6006144 | La Jolla, CA | $63K | Cash | CARE CENTER GRANT |
Yale University | New Haven, CT | $60K | Cash | CARE CENTER GRANT |
KANSAS UNIVERSITY ENDOWMENT ASSOC48-0547734 | Lawrence, KS | $60K | Cash | CARE CENTER GRANT |
BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SYSTEM39-6006492 | Madison, WI | $60K | Cash | CARE CENTER GRANT |
BOARD OF REGENTS OF THE UNIVERSITY OF OK HEALTH SCIENCES CENTER73-1563627 | Oklahoma City, OK | $60K | Cash | FELLOWSHIP |
Rogosin Institute13-3184198 | New York, NY | $28K | Cash | CARE CENTER GRANT |
University of Wisconsin39-6006492 | Madison, WI | $22K | Cash | CARE CENTER GRANT |
The University of Texas Health Science Center at San Antonio74-1586031 | San Antonio, TX | $5,924 | Cash | COMMUNITY ENGAGEMENT GRANT |
| Total | $2.6M | |||
Kansas City, KS
$380K
University of Colorado
Denver, CO
$287K
Rochester, MN
$260K
University of Alabama at Birmingham
Birmingham, AL
$160K
Chicago, IL
$140K
University of Maryland Baltimore
Baltimore, MD
$140K
New York, NY
$80K
National Institutes of Health
Bethesda, MD
$80K
University of Arizona
Tucson, AZ
$80K
Baltimore, MD
$80K
Michigan Technological University
Houghton, MI
$80K
Atlanta, GA
$73K
Washington, DC
$70K
$67.1K
Swedish Medical Center Foundation
Seattle, WA
$67K
Tufts Medical Center
Boston, MA
$65K
Jacksonville, FL
$65K
REGENTS OF THE UNIV OF CALI - UC SAN DIEGO
La Jolla, CA
$63K
Yale University
New Haven, CT
$60K
Lawrence, KS
$60K
BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SYSTEM
Madison, WI
$60K
BOARD OF REGENTS OF THE UNIVERSITY OF OK HEALTH SCIENCES CENTER
Oklahoma City, OK
$60K
New York, NY
$28K
University of Wisconsin
Madison, WI
$22K
The University of Texas Health Science Center at San Antonio
San Antonio, TX
$5,924
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2023 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2023IRS e-File | $8.8M | $8.2M | $9.6M | $34.6M | $33.7M |
| 2022IRS e-File | $10.3M | $9.5M | $9.1M | $33.1M | $32.4M |
| 2021 | $9M | $7.6M | $6.8M | $25.7M | $22.5M |
| 2020 | $16.1M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
Financial data: IRS e-Filed Form 990 (Tax Year 2023)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2023)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Susan Bushnell | Chief Executive Officer | 40 | $252.6K | $0 | $102.5K | $355K |
| Carmen Gleason | Chief Operations Officer | 40 | $235.7K | $0 | $75K | $310.6K |
| Matthew Becka | Chief Research Officer | 40 | $118.7K | $0 | $51.9K | $170.6K |
| Craig Robertson | Chief Growth Officer | 40 | $115.9K | $0 | $42.2K | $158K |
| Amanda Yen | Director/secretary | 1 | $0 | $0 | $0 | $0 |
| Chris Wess | Director/vice Chair | 1 | $0 | $0 | $0 | $0 |
| Navin Manglani | Director/chair | 1 | $0 | $0 | $0 | $0 |
| Stu Caplan | Director/treasurer | 1 | $0 | $0 | $0 | $0 |
Susan Bushnell
Chief Executive Officer
$355K
Hrs/Wk
40
Compensation
$252.6K
Related Orgs
$0
Other
$102.5K
Carmen Gleason
Chief Operations Officer
$310.6K
Hrs/Wk
40
Compensation
$235.7K
Related Orgs
$0
Other
$75K
Matthew Becka
Chief Research Officer
$170.6K
Hrs/Wk
40
Compensation
$118.7K
Related Orgs
$0
Other
$51.9K
Craig Robertson
Chief Growth Officer
$158K
Hrs/Wk
40
Compensation
$115.9K
Related Orgs
$0
Other
$42.2K
Amanda Yen
Director/secretary
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Chris Wess
Director/vice Chair
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Navin Manglani
Director/chair
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Stu Caplan
Director/treasurer
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Krystn Kuckelman | VP Of Community Development | 40 | $135.3K | $0 | $80.7K | $216K |
| Elise Hoover | Director Of Research | 40 | $123K | $0 | $12K | $135K |
| Desiree White | VP Of Information Systems | 40 | $111.5K | $0 | $20.4K | $131.9K |
Krystn Kuckelman
VP Of Community Development
$216K
Hrs/Wk
40
Compensation
$135.3K
Related Orgs
$0
Other
$80.7K
Elise Hoover
Director Of Research
$135K
Hrs/Wk
40
Compensation
$123K
Related Orgs
$0
Other
$12K
Desiree White
VP Of Information Systems
$131.9K
Hrs/Wk
40
Compensation
$111.5K
Related Orgs
$0
Other
$20.4K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Alix Piccirilli | Director | 1 | $0 | $0 | $0 | $0 |
| Debora Plunkett | Director | 1 | $0 | $0 | $0 | $0 |
| Foaud T Chebib Md Fasn | Director | 1 | $0 | $0 | $0 | $0 |
| Glenn Frommer | Director | 1 | $0 | $0 | $0 | $0 |
| Julie Marshall | Director | 1 | $0 | $0 | $0 | $0 |
| Meyeon Park | Director |
Alix Piccirilli
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Debora Plunkett
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Foaud T Chebib Md Fasn
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Individuals who previously served as officers or key employees.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Jonathan Rich | Chief Development Officer | 40 | $179.5K | $0 | $10.2K | $189.7K |
Jonathan Rich
Chief Development Officer
$189.7K
Hrs/Wk
40
Compensation
$179.5K
Related Orgs
$0
Other
$10.2K
| $15.8M |
| $7.2M |
| $20.9M |
| $17.8M |
| 2019 | $6.8M | $6.5M | $8.2M | $10.6M | $8.8M |
| 2018 | $5.8M | $5.7M | $6.1M | $5.2M | $4.7M |
| 2017 | $5.8M | $5.7M | $6.1M | $5.2M | $4.7M |
| 2016 | $5.9M | $5.9M | $6.6M | $5.7M | $4.8M |
| 2015 | $7.5M | $7.5M | $6.5M | $6.5M | $5.5M |
| 2014 | $6.9M | $6.8M | $6.8M | $5M | $4.5M |
| 2013 | $9M | $9M | $6.4M | $4.7M | $4.4M |
| 2012 | $7.1M | $6.8M | $6.9M | $2.4M | $1.8M |
| 2011 | $7.6M | $7.5M | $8.3M | $2.4M | $1.7M |
| 2021 | 990 | Data | PDF not yet published by IRS |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| 1 |
| $0 |
| $0 |
| $0 |
| $0 |
| Michael Haggard | Director | 1 | $0 | $0 | $0 | $0 |
| Shawna Webb | Director | 1 | $0 | $0 | $0 | $0 |
| Visha Patel Md | Director | 1 | $0 | $0 | $0 | $0 |
Glenn Frommer
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Julie Marshall
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Meyeon Park
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Michael Haggard
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Shawna Webb
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0
Visha Patel Md
Director
$0
Hrs/Wk
1
Compensation
$0
Related Orgs
$0
Other
$0