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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.
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.
Watch this video to learn more about PKD. Then, share it with friends to raise awareness about this chronic, life-threatening genetic disease.
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.
The PKD Foundation is established by both Jared Gantham, M.D., and Joseph Bruening to find treatments and a cure for PKD
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.
First PKD Progress magazine produced. Chromosomal location of a human ADPKD gene discovered.
First local PKD Chapter formedin Chicago. Evidence found that cysts are benign neoplasms. Proto-oncogenes are found to be elevated in cysts.
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 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.
PKD1 gene is discovered (responsible for 85% of ADPKD cases).
NIH establishes PKD Centers of Excellence at four research institutions. PKD Foundation website is launched.
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.
ARPKD gene is discovered. Vasopressin receptor is identified as possible therapeutic target for PKD.
Tolvaptan, which targets the vasopressin receptor and the first drug to potentially treat PKD, enters clinical trials.
U.S. Senate passes first-ever National PKD Awareness Week Resolution to help promote the Walk for PKD.
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.
PKD Outcomes Consortium (PKDOC) is formed to support using total kidney volume (TKV) as an endpoint for human clinical trials.
Tolvaptan, the first drug to show promise in treating PKD, is accepted for priority review by the FDA.
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.
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).
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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