Pkd Foundation
Public records show a registered, tax-exempt organization in good standing.
What it says it does
WE GIVE HOPE. WE FUND RESEARCH, ADVOCATE FOR PATIENTS, AND BUILD A COMMUNITY FOR ALL IMPACTED BY PKD.
- Income
- $11.0 million
- Spending
- $9.9 million
- Spent on programs
- 74%
- Reserves
- 26.2 months of spending
- Largest source of income
- donations and private grants, 88%
- Employees
- 35
- Volunteers
- 800
- Highest pay
- $364,576, president & ceo
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 100 out of 100.
Reserves
35 of 35Spendable reserves would cover 26.2 months of spending.
Debt
20 of 20It owes 2% of what it owns.
Living within its means
15 of 15Income exceeded spending by 10% of income.
Income trend
15 of 15Income rose 25% on the year before.
Spending floor
15 of 1573% of spending went to programs and raising each dollar of donations cost 10 cents.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100.
Independent board
25 of 2513 of 14 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $4.8 million spent. RESEARCH: SINCE ITS FOUNDING IN 1982, THE FOUNDATION HAS INVESTED MORE THAN $50 MILLION IN RESEARCH, CLINICAL AND SCIENTIFIC GRANTS, AWARDS, FELLOWSHIPS AND SCIENTIFIC MEETINGS, MAKING IT THE LARGEST PRIVATE FUNDER OF POLYCYSTIC KIDNEY DISEASE (PKD) RESEARCH. THE FOUNDATION'S FINANCIAL COMMITMENT OVER THE YEARS HAS SEEN RESULTS ON A LOCAL, NATIONAL AND EVEN GLOBAL LEVEL, INCLUDING INITIATING FUNDING FOR YOUNG INVESTIGATORS FROM AROUND THE WORLD; SUPPORTING INNOVATIVE RESEARCH IDEAS; AND PROVIDING SEED FUNDING TO ALLOW RESEARCHERS WORLD-WIDE TO APPLY FOR LARGER NATIONAL INSTITUTE OF HEALTH (NIH) GRANTS. INITIATIVES INCLUDED IN RESEARCH ARE OUTLINED BELOW. RESEARCH GRANTS: SUPPORT FOR BASIC LABORATORY RESEARCH AIMED AT INCREASING UNDERSTANDING OF THE GENETIC AND PATHOLOGICAL PROCESSES INVOLVED IN PKD AS WELL AS RESEARCH WITH AN OBVIOUS OR DIRECT POTENTIAL TO ACCELERATE THE DEVELOPMENT OF POTENTIAL THERAPIES. RESEARCH FELLOWSHIPS: SUPPORT AND RECOGNIZE EARLY-CAREER SCIENTISTS WHOSE ACHIEVEMENTS AND POTENTIAL IDENTIFY THEM AS RISING STARS - THE NEXT GENERATION OF SCIENTIFIC LEADERS IN PKD RESEARCH. OUR FELLOWSHIPS AIM TO ATTRACT PROMISING TRAINEES WHO WILL OBTAIN SIGNIFICANT RESEARCH EXPERIENCE AS THEY INITIATE AND - WE HOPE - SPEND LONG AND PRODUCTIVE CAREERS IN PKD RESEARCH. PKD OUTCOMES CONSORTIUM (PKDOC): A SIGNIFICANT COLLABORATION BETWEEN THE FOUNDATION, CRITICAL PATH INSTITUTE, REPRESENTATIVES OF THE PHARMACEUTICAL INDUSTRY, PKD CLINICIANS, AND THE U.S. FOOD AND DRUG ADMINISTRATION (FDA). IT WAS CREATED TO FACILITATE CLINICAL TRIAL DEVELOPMENT FOR PKD THERAPIES BY ESTABLISHING A CLEAR REGULATORY PATHWAY FOR THE PHARMACEUTICAL INDUSTRY TO EVALUATE THE EFFECTIVENESS OF POTENTIAL TREATMENTS. ADPKD REGISTRY: AN ONLINE, DIRECT-TO-PATIENT, LONGITUDINAL REGISTRY FOR INDIVIDUALS DIAGNOSED WITH ADPKD IN THE UNITED STATES. THE REGISTRY ALSO PROVIDES TARGETED CLINICAL STUDY RECRUITMENT FOR BOTH ACADEMIC AND INDUSTRY-SPONSORED STUDIES IN PATIENTS.
- $1.6 million spent. AWARENESS AND ADVOCACY: THE FOUNDATION USES MARKETING TO INCREASE DISEASE AWARENESS, PROMOTE THE FOUNDATION'S SERVICES, AND INSPIRE THE PUBLIC TO SUPPORT THE FOUNDATION'S MISSION. MARKETING MATERIALS INCLUDE PKD LIFE MAGAZINE, A MONTHLY EMAIL NEWSLETTER, SOCIAL MEDIA, THE PKD BLOG, AND PKDCURE.ORG. IN ADDITION, FOUNDATION REPRESENTATIVES AND VOLUNTEERS DIRECTLY ENGAGE LEGISLATORS TO ENCOURAGE SUPPORT OF LEGISLATION THAT INCREASES FUNDING FOR AND AWARENESS OF PKD. THE FOUNDATION ADVOCATES FOR PKD PATIENTS IN POLICYMAKING, DRUG DEVELOPMENT, AND REGULATORY DECISION-MAKING AT THE STATE AND FEDERAL LEVEL. OUR GOALS ARE TO RAISE AWARENESS AND FURTHER LEGISLATION, REGULATION, AND FEDERAL FUNDING OPPORTUNITIES THAT IMPROVE THE LIVES OF EVERYONE IN THE PKD COMMUNITY.
- $951,944 spent. EDUCATION AND SUPPORT: THE PKD FOUNDATION SUPPORTS THE PKD COMMUNITY THROUGH MORE THAN 55 VOLUNTEER-LED CHAPTERS ACROSS THE UNITED STATES. CHAPTERS PROVIDE MEANINGFUL OPPORTUNITIES FOR THE LOCAL COMMUNITY TO GATHER TOGETHER TO LEARN FROM EXPERTS OR IN SUPPORT OF EACH OTHER. CHAPTERS RAISE FUNDS FOR THE FOUNDATION THROUGH EVENTS LIKE COCKTAILS FOR A CURE AND THE WALK FOR PKD, THE FOUNDATION'S SIGNATURE EVENT TO RAISE FUNDS AND AWARENESS. WALKS TAKE PLACE IN MORE THAN 50 CITIES ACROSS THE NATION EACH YEAR AND HAVE RAISED OVER $33 MILLION SINCE 2000. ON A NATIONAL LEVEL, THE PKD FOUNDATION EMPOWERS PKD PATIENTS AND CAREGIVERS TO MANAGE PKD WHILE MAINTAINING A HIGH QUALITY OF LIFE. THE FOUNDATION PROVIDES RESOURCES ACROSS THE CONTINUUM OF DISEASE PROGRESSION FOR PATIENTS, CAREGIVERS, PARENTS, ETC. RESOURCES INCLUDE WEBINARS, ENDURING WEBCASTS, VIDEOS, A COMPREHENSIVE WEBSITE (PKDCURE.ORG/EDUCATION), HANDBOOKS AND OTHER PRINT MATERIALS. THE ANNUAL PKD NATIONAL CONFERENCE (PKDCON) IS THE FOUNDATION'S LARGEST EDUCATION EVENT BRINGING TOGETHER THE ENTIRE PKD COMMUNITY INCLUDING, PATIENTS, CAREGIVERS, VOLUNTEERS, RESEARCHERS AND CLINICIANS.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending June 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since November 1982.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.
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