Who we are

We are on a mission to end PKD

We are the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improve the lives of those it affects. We do this through promoting research, education, advocacy, support and awareness on a national level, along with direct services to local communities across the country. We are the largest private funder of PKD research. Over the last 30 years, we have invested more than $40 million in basic and clinical research, nephrology fellowships and scientific meetings with a simple goal: to discover and deliver treatments and a cure for PKD.

Team photo

PKD Foundation staff

Our vision is that one day no one will suffer the full effects of PKD.

Our mission is to promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for polycystic kidney disease and improve the lives of all it affects.

How we came to be

Jared J. Grantham, M.D., and Joseph H. Bruening founded the PKD Foundation over 30 years ago to find treatments and a cure for PKD. When they started, no one knew much about PKD. The PKD genes hadn’t been identified and only a small number of researchers were working in PKD science. Since then, the PKD Foundation has invested more than $42 million in basic research and clinical grants, as well as nephrology research fellowships and scientific meetings, making us the largest private funder of PKD research. Further, the Foundation has worked closely with regulatory agencies to develop endpoints for clinical trials in PKD. The Foundation’s investment in research and drug development is moving us closer to finding treatments for PKD. Today, there are nearly 40 active PKD Foundation-funded research projects underway in the areas of ADPKD, ARPKD, and polycystic liver disease (PLD). Five potential treatments are in clinical trials for PKD, including the repurposing of pioglitazone, a type 2 diabetes drug, partially funded by the Foundation. The others include metformin, niacinamide (vitamin B3), tesevatinib and tolvaptan. Every day brings us closer to a day when no one will suffer the full effects of PKD. Meet Dr. Jared Grantham Meet Joseph Bruening

How far we’ve come

Learn about our progress toward a future without PKD.

  • 1982
    The PKD Research Foundation is established by Jared Grantham, M.D., and Joseph Bruening to find treatments and a cure for PKD.
  • 1984
    First PKD Foundation (PKDF) research grant of $25,000 is awarded to William Bennett, M.D. who went on to be awarded the PKD Foundation Jared J. Grantham Distinguished Achievement Award and honored for his contributions to nephrology.
  • 1985
    First PKD Progress magazine produced. Chromosomal location of a human ADPKD gene discovered.
  • 1987
    First local PKD Chapter formed in Chicago. Evidence found that cysts are benign neoplasms. Proto-oncogenes are found to be elevated in cysts.
  • 1988
    Explant cultures of human cysts developed for laboratory studies of pathogenesis and therapy of ADPKD.
  • 1989
    First PKD National Convention held in Kansas City to educate patients and health care professionals about PKD. Discovery of the important role for cyclic AMP to increase cell proliferation in cystic disease.
  • 1990
    PKDF lobbies Congress to include the first Appropriations Committee report language about PKD research support by the National Institutes of Health (NIH), encouraging the NIH to expand research in the pathogenesis and treatment of PKD.
  • 1992
    Important factors affecting the progression of cystic disease found in a large cohort of patients.
  • 1993
    The National Institutes of Health (NIH) makes major federal investment in PKD research of $5.73 million.
  • 1994
    PKD1 gene is discovered (responsible for 85% of ADPKD cases).
  • 1995
    PKD2 gene is discovered (responsible for 15% of ADPKD cases).
  • 1996
    Polycystin 1 & 2, protein products of PKD genes identified.
  • 1998
    NIH establishes PKD Centers of Excellence at four research institutions. PKD Foundation website is launched.
  • 2000
    900 PKD patients, families and friends raise $214,000 in the first Walk for PKD. Consortium for Renal Imaging Studies of PKD (CRISP) study begins as the first longitudinal study of PKD patients supported by the NIH.
  • 2001
    Strategic planning meeting for PKD co-sponsored with NIH occurred.
  • 2002
    ARPKD gene is discovered. Vasopressin receptor is identified as possible therapeutic target for PKD.
  • 2004
    Tolvaptan, which targets the vasopressin receptor and the first drug to potentially treat PKD, enters clinical trials.
  • 2005
    HALT clinical trial to study effects of blood pressure control in PKD patients begins.
  • 2006
    U.S. Senate passes first-ever National PKD Awareness Week Resolution to help promote the Walk for PKD.
  • 2007
    FDA (US Food and Drug Administration) and PKD Foundation workshop Clinical Trial Endpoints in PKD held.
  • 2008
    First PKD Foundation United on the Hill event is held in Washington D.C. to push for more federal funding for PKD research and to pass the Genetic Information Nondiscrimination Act (GINA). After a 13-year fight, GINA is passed by Congress and signed into law.
  • 2010
    PKDOC (PKD Outcomes Consortium) is formed to support using total kidney volume (TKV) as an endpoint for human clinical trials.
  • 2012
    PKD Foundation and FDA meet to discuss the PKDOC database analysis. Results of the TEMPO 3:4 clinical trial are presented at the American Society of Nephrology Kidney Week meeting.
  • 2013
    Tolvaptan, the first drug to show promise in treating PKD, is accepted for priority review by the FDA.
  • 2014
    PKDOC submits final qualification package for total kidney volume (TKV) to the FDA and European Medicines Agency (EMA). Fifteen two-year research grants awarded by PKDF for a total investment of $2.4 million. REPRISE, a phase 3b study of tolvaptan for adult patients with ADPKD by Otsuka, begins enrollment. JINARC (tolvaptan) is approved in Japan as a treatment for ADPKD. Results of HALT-PKD clinical trials are presented at the American Society of Nephrology Kidney Week meeting.
  • 2015
    JINARC (tolvaptan) is approved in Canada as a treatment for ADPKD. Five two-year PKD research fellowships are awarded by PKDF to rising star clinicians and scientists for a total investment of $500,000. FDA and EMA approve TKV as prognostic enrichment biomarker for use in clinical trial design. The Jared J. Grantham Research Fellowship is established with the American Society of Nephrologists (ASN) to support PKD-related research in perpetuity. PKD Foundation’s $500,000 investment is matched by $1.5 million from the ASN.
  • 2016
    Fifteen two-year research grants awarded by PKDF for a total investment of $2.4 million. ADPKD Biomarker Summit, sponsored by the PKD Foundation, is held to define the regulatory path for approval of novel therapeutic candidates for early treatment of PKD.

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