PKD Is Closer Than You Think

Over 600,000 Americans are currently living with polycystic kidney disease (PKD), a chronic, life-threatening genetic disease that enlarges the kidneys. Join us on September 4 to raise awareness about this disease. We can only find resources for treatment if we come together to share our stories.

Neighbor, co-worker, friend: who do you know with PKD?

Sharing your story has never been more important.

With 600,000 Americans living with PKD today, chances are high that you know someone with the disease. Currently, there is no direct treatment or cure for this painful illness that enlarges kidneys; instead, the affected are often forced to undergo dialysis or transplant in order to survive.

We’re working hard to find treatment options, but we need your help to raise awareness about PKD and encourage action in finding a cure.

Learn about PKD and how you can spread the word.

What is PKD?

Watch this video to learn more about PKD. Then, share it with friends to raise awareness about this chronic, life-threatening genetic disease.

Stephanie Smetana Relationship to PKD: Patient and member of a family experiencing generational PKD. Diagnosis: In 2006 I was diagnosed with PKD and this year have experienced my own hemorrhagic and infected cysts. I pray my son does not have PKD! Read Stephanie’s story » Our journey with PKD started a few years ago. My husband and I have four daughters, Our oldest two, 9 and 10, have PKD. The day of our diagnosis I remember feeling like our world had crashed around us. I had never been a part of situation where so many negative things were said at once. Our heads were spinning and our hearts were breaking for our girls. Not only were we told they had this disease, but that theirs was an aggressive form for their age. I had two options rock in a corner or stay strong for my family. I rocked in a corner a lot while finding my strength. My husband and I jumped into the PKD foundation. We educated ourselves on this disease and made a decision that somehow we would make people care about. Our heads were spinning and our hearts were breaking for our this disease. It took us over a year to find the right group of specialists. Sometimes I felt like we knew more about this disease than the Doctors did. We searched high and low and finally found the right team of Docs for us. Because of the foundation I am now surrounded with my dream team of support. We have two families... We would have never been successful in getting to where we are today without the love and support of our PKD family. We have a long road ahead. As my girls say, "We'll never stop fighting!" Maureen Bickings Relationship to PKD: Patient with PKD and parent to a child with PKD. Diagnosis: I was diagnosed in my thirties with a husband, 3 children and life in full swing, I was terrified! Read Maureen's story » PKD is not be allowed to beat me! Diagnosed in my thirties with a husband, 3 children and life in full swing, I was terrified! Life changed, not abruptly at first but more slowly Over the span of a few years I grew tired and became, pained and a faint memory of who I use to be then one last quick descent and I'm now stage 5 and more fearful then I thought possible Not for me but for them, would this story become theirs too? How can we stop our future generations from hurting and fear? Research and awareness are key to our survival and to stop the progression, I will not stop nor bow to this disease! Every family deserves a better outcome. Jacque English Relationship to PKD: Patient with PKD Diagnosis: I was diagnosed in 2003. Read Jacque's story » I was diagnosed with PKD in 2003. I manage my disease with blood pressure medication and regular trips to my nephrologist. My kidneys are getting larger and my function is beginning to decline. Seven years ago this August, my mom passed away from complications from PKD. She battled PKD for years and finally received a life-saving kidney transplant from her sister in 2001. I miss my mom every day. I know she would have loved meeting her grandchildren and that she would've been proud to know how much we’re doing to fight PKD. Mom and I walked in her last Walk for PKD in 2009. We had planned to walk in 2010 but she passed away the month before the event. I’m inspired by her memory and the future of my daughters to volunteer in any way I can to support the PKD Foundation’s work to ENDPKD. Peggy Robinson Relationship to PKD: Patient with PKD Experience: I suffer the large "9 months pregnant" belly, consistent with large polycystic kidneys. I have pain in my back and sides up high under my rib cage. I have reflux and easily get winded from exercise with the upward pressure on my diaphragm.

Polycystic kidney disease is closer to home than you realize.

Let’s do the math: If every American has 150 acquaintances and 600,000 Americans are living with PKD, then there are only 1.2 degrees of separation between the healthy American and person with PKD. 

Our History

1982

The PKD Foundation is established by both Jared Gantham, 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 was later 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 formedin Chicago. Evidence found that cysts are benign neoplasms. Proto-oncogenes are found to be elevated in cysts.

1989

First PKD National Convention held in Kansas City to educate patients and health careprofessionals about PKD Discovery of the important role for cyclic AMP to increase cell proliferation in cystic disease.

1990

1990 PKDF lobbies Congress toinclude 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.

1994

PKD1 gene is discovered (responsible for 85% of ADPKD cases).

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 study of PKD patients supported by the NIH.

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.

2006

U.S. Senate passes first-ever National PKD Awareness Week Resolution to help promote the Walk for PKD.

2008

The PKD Foundation pushed to pass the Genetic Information Nondiscrimination Act (GINA) in Washington. After a 13-year fight, GINA is passed by Congress and signed into law.

2010

PKD Outcomes Consortium (PKDOC) is formed to support using total kidney volume (TKV) as an endpoint for human clinical trials.

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.

2015

Tolvaptan is approved in Canada as a treatment for ADPKD. Five two-year research fellowships are awarded to rising star clinicians and scientists for a total investment of $500,000. This investment is matched by $1.5 million from the American Society of Nephrologists (ASN).

2016

Fifteen research grants are awarded for a total investment of $2.4 million. The ADPKD Biomarker Summit is held, working to establish a path for approving new medication for early treatment of PKD.

The Faces of PKD.

Fighting this disease is nearly impossible, but survivors of PKD are resilient, courageous, and strong. Read our stories to learn more about the men, women and children living with PKD.

Tom MacAulay

We will continue to wear our jerseys, spreading awareness and opportunities to donate.

Thomas MacAulay, Bill King, Mike Bizal, Ed Williams, Art Berger, and Chuck Mattioni took an 18-day bike Tour from Seattle to San Diego to raise awareness for PKD.

Read Tom's Story
Nicole Harr

My best friend is giving me the gift of life.

This past year, Nicole and Sue have shared a truly unique experience: Sue became Nicole’s living donor. Read about the emotional experience in this firsthand account.

Read Nicole's Story
Paul Chapman

Fundraising for the PKD Foundation inspires me to live my life to the fullest.

Paul Chapman is determined to help eradicate PKD, starting with an awareness hike across the 2,200 mile-long Appalachian Trail.

Read Paul's Story
Peggy Krusell

Fundraising toward research is the biggest difference we can make as individuals.

We recently sat down with Peggy Krusell to learn more about her Walk team’s amazing achievements and why she fundraises.

Read Peggy's Story
Gene Okun

My kidneys might just be the biggest doctors have ever seen in a PKD patient.

Meet Gene! Since diagnosis, Gene’s kidneys have grown big (doctors say they may be the world’s largest) and “dumb” (functioning atonly 18 percent).

Read Gene's Story
David Baron

I am energized by working with these highly motivated people of all stripes.

Dr. Baron is both our Chief Scientific Officer and a person living with PKD. In this story, Dr. Baron discusses for what he is most thankful.

Read David's Story
Beth Leven

It’s great when you see so many PKD families together who inspire each other.

Beth Leven, Austin Walk Coordinator, has been involved in the PKD Foundation’s volunteer leadership for the past 15 years in both the Boston and Austin Chapters.

Read Beth's Story
The Phelps Family

You are your greatest advocate. Be up front with doctors about what you’re feeling.

Read Ashley and Michael’s open discussion about her ADPKD diagnosis, how it affects their family, and what the future holds.

Read The Phelps Family's Story
Alex Coglianese

My father’s kidneys failed, and the word “dialysis” was added to my vocabulary.

Born the same year as the Foundation’s establishment, she recalls her beloved father, Fred,a PKD patient himself, being one of theorganization’s very first supporters.

Read Alex's Story
Paige Trischler

I don’t let one bad thing ruin something as beautiful as a new day.

Paige discusses what she’s Thankful for aspart of our Thankful series. Read about Paige’s appreciation for friends, family, and the chance for new days.

Read Paige's Story

Help us spread the word.

You can join in by sharing the stories you’ve read today, adding your own story here, or by simply changing your social media profile picture and cover photos. These simple changes help us spread awareness.

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