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Alturistic Donor and the Transplant Chain She Inspired
Friday, March 27, 2015

CBS News

Read the full story

Saintsation Kriste spoke at Polycystic Kidney Disease Foundation's Leadership Conference
Tuesday, March 17, 2015

Kriste LewisSaintsation Kriste was a guest speaker at the Polycystic Kidney Disease (PKD) Foundation's Leadership Conference in Kansas City, Mo., from Feb. 20-22. There were more than 100 people in attendance; two representatives from each state and some representatives from Canada. Attendees were chapter coordinators and leaders across the country with goals of updating each other on ongoing kidney research and continuing to raise awareness of PKD.

Read more about Kriste

Cincinnati 5 Year Old Writes a Book About His "Bumpy Kidneys"
Monday, March 16, 2015

RenewableEnergyWorld.comLogan's Bumpy Kidneys

Logan Wiesman, now 5 years old, found out he had bumpy kidneys when he was just 2. He told his mom that his back was hurting, but he didn't know why. After several tests, they figured it out. His kidneys were already the size of adults' kidneys, and they were very, very "bumpy."

Read more about Logan's book

CHMP Recommends JINARC® (Tolvaptan) for Approval in EU: The First Pharmaceutical Treatment for Autosomal Dominant Polycystic Kidney Disease (ADPKD)
Friday, February 27, 2015

Otsuka Pharmaceutical Co., Ltd. announced today that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has recommended JINARC® (tolvaptan) for approval. This treatment has been recommended to slow the progression of cyst development and renal insufficiency of autosomal dominant polycystic kidney disease (ADPKD) in adults with chronic kidney disease (CKD) stage 1 to 3 at initiation of treatment with evidence of rapidly progressing disease.

Read the full press release from Otsuka Pharmaceutical Co., Ltd.

Treatment for ADPKD Approved in Canada
Thursday, February 26, 2015

PillsJINARC™ (tolvaptan) has been approved in Canada as a treatment for autosomal dominant polycystic kidney disease (ADPKD). JINARC™ was discovered in Japan by Otsuka Pharmaceutical and was first approved there for ADPKD in 2014. The Health Canada approval of JINARC™ is based on the results of the pivotal Phase 3 randomized, double-blind and placebo-controlled TEMPO 3:4 Trial, the largest study conducted to date in adults with ADPKD.

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Early Data Suggest Kidney Allocation System Meeting Key Expectations
Friday, January 30, 2015

Kidney transplant data from the first four weeks after implementation of the new kidney allocation system (KAS) suggest that a number of key outcomes are meeting expectations, while other trends merit continued close monitoring. These are detailed in a report released by UNOS.

Please note that early data may not be a reliable indicator of trends that will either change or become more pronounced as additional kidneys are recovered and transplanted. Data will be analyzed at regular intervals to continue to study the performance of the allocation system and identify areas of potential improvement.

Compared to trends before KAS implementation in early December 2014, the early results indicate three major changes that are consistent with key performance goals for the new system:

  • a seven-fold increase in transplants for patients with the highest immune system sensitivity (a CPRA score from 99 to 100 percent)
  • an increase in transplants for recipients outside the local donation service area, from about 20 percent before KAS implementation to about 35 percent
  • drop in the number of transplants where the donor age was 15 years or more different from the recipient age

Read the full OPTN/UNOS press release

PKD Foundation Welcomes New Chief Scientific Officer
Monday, January 05, 2015

Dr. David BaronWe are excited to announce our new Chief Scientific Officer (CSO), who will be joining the PKD Foundation on Feb. 9. David Baron, Ph.D., will be leading the Foundation's work in research toward finding treatments and a cure. Baron's background in biomedical sciences and drug development will keep us moving forward with progress in research.

Learn about our new CSO

OPTN/UNOS Board Approves Policies on Living Donor Evaluation and Consent, Donor Disease Risk Assessment
Tuesday, November 18, 2014

St. Louis – The OPTN/UNOS Board of Directors, at its meeting November 12-13, approved policies to ensure thorough and consistent processes are used in the medical evaluation and informed consent process for living organ donors. The policies specifically address living donation for kidney transplantation as well as segmental liver, lung, intestine and/or pancreas transplantation.

"These policies will support the needs and interests of people who choose to help a relative, a friend, or even a complete stranger through living donation," said Carl Berg, M.D., OPTN/UNOS president. "They standardize certain medical tests, evaluation criteria and informed consent processes at all transplant hospitals. The individual transplant team will still decide whether living donation is appropriate for a given potential donor. In many cases, the transplant program will perform additional tests and take additional steps to help them make that decision."

Similar policies have been in effect since February 2013 for living donor kidney transplantation, which is the most common form of living organ donation. The policies newly approved by the Board address commonalities for living donation of kidney, liver, lung, intestine and pancreas, while specifying additional criteria most appropriate to each organ type.

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HALT-PKD Study Finds Rigorous Blood-Pressure Control Could Slow Cyst Growth in ADPKD
Saturday, November 15, 2014

A presentation regarding the results of the HALT-PKD clinical trial was shared this morning at the American Society of Nephrology (ASN) Kidney Week meeting.

The HALT study is important to the PKD community because neither the optimal blood pressure target levels, nor the best medications for control of blood pressure in ADPKD, were known when the study was started in 2006 (the study was completed in June 2014). Currently, the complications of hypertension, including stroke and heart attack, affect many more individuals with ADPKD than ADPKD-specific complications such as liver cysts or brain aneurysms.

According to the New England Journal of Medicine: "These two studies provide important guidance for the care of patients with ADPKD. They show that blood pressure can be controlled with ACE inhibitors, drugs that have an acceptable safety profile. They suggest that rigorous blood-pressure control, early in the disease process, may slow cyst growth and reduce the left-ventricular-mass index, but this approach is complicated by increased dizziness."

Read more

PKD Foundation Sponsors International PKD Research Conference
Tuesday, August 19, 2014

Federation of American Societies for Experimental Biology (FASEB)As part of the PKD Foundation's Accelerating Treatments to Patients program, we fund PKD-related scientific meetings that bring experts together and provide continuing education for health professionals.

We were a major sponsor of the Federation of American Societies for Experimental Biology (FASEB) Science Research Conference on Polycystic Kidney Disease: From Molecular Mechanism to Therapy Aug. 3-8, 2014, in Italy. The international conference welcomed prominent scientists working in areas experiencing rapid scientific advances and conducting cutting-edge research. It was also an opportunity for young investigators and new fellows to attend and hear from more seasoned researchers. PKD Foundation Scientific Advisory Committee Chair Dr. Terry Watnick attended the meeting, along with Dr. Ron Perrone and other key researchers and clinicians connected to the PKD Foundation.

This is the fifth time FASEB has had a meeting focused on PKD since 2002. FASEB is the nation's largest coalition of biomedical researchers, representing 27 scientific societies and more than 120,000 researchers internationally. FASEB is recognized as the policy voice of biological and biomedical researchers.

40-Year-Old Mom with PKD Becomes New Orleans Saints' Cheerleader
Wednesday, July 16, 2014

Kriste Lewis, a 40-year old mom with polycystic kidney disease (PKD), has become a New Orleans Saints cheerleader.

Lewis, who is a dance instructor, decided to fulfill her lifelong dream when she turned 40 and tried out for the squad last April. She said she used her age and health issue as an inspiration.

"Fourteen years ago I was diagnosed with polysistic kidney disease," Lewis said. "Eventually my kidneys will shut down [and] I will be in need of dialysis and in need of a transplant."

"That had a lot to do with me auditioning as well," she said. "I didn't want to waste a day."

Read more about Kriste and watch her interview on ABC's "Good Morning America."

Statins Given Early Decrease Progression of Kidney Disease
Tuesday, July 15, 2014

AURORA, Colo. - Results from a study by University of Colorado School of Medicine researchers show that pravastatin, a medicine widely used for treatment of high cholesterol, also slows down the growth of kidney cysts in children and young adults with autosomal dominant polycystic kidney disease (ADPKD).

Read the full news release

Suzanne Ruff, Author of "The Reluctant Donor" Appears on "Charlotte Today"
Thursday, July 10, 2014

Suzanne Ruff on Charlotte Today

PKD Foundation's Ray Smith Honored as CFO of the Year
Monday, July 07, 2014

Gerry and Ray SmithCongratulations to the PKD Foundation's CFO, Ray Smith. Ray was honored by the Kansas City Business Journal as CFO of the Year in the nonprofit sector. Ray was honored recently at a reception and poses here with his father, Gerry Smith.

The Kansas City Business Journal honors financial executives who are outstanding stewards of their organizations. The honorees were chosen based on their contributions to the organization's growth and financial success, their roles in corporate management and strategic planning and their community involvement. Congratulations Ray!

PKD Foundation Among Top 30 Grant-Giving Disease Foundations in 2014
Tuesday, July 01, 2014

Genetic Engineering & Biotechnology News published a list of the top 30 nonprofit disease foundations that give grants and other awards for research — and the PKD Foundation made the list at #17!

"As the largest private funder of PKD research and more than 30 years of leading the fight against PKD, we are proud to support the work being done to find treatments and a cure," said PKD Foundation CEO Jackie Hancock, Jr. "To continue this work, we will spend nearly $2.4 million over the next two years on 15 research grants to PKD researchers throughout the U.S., as well as Canada and Italy."

View the full list of organizations

Elizabeth Bruening Lewis
Monday, June 16, 2014

Elizabeth Bruening Lewis, author and daughter of PKD Foundation co-founder Joseph Bruening, passed away on June 7. Lewis's father and Dr. Jared Grantham started the PKD Foundation in 1982, after she and her mother, Allene, were diagnosed with the disease. Elizabeth Lewis was diagnosed with PKD in 1975. She was on dialysis before having a successful kidney transplant in 1989.

Lewis was closely associated with the PKD Foundation for many years, helping raise awareness and funds for the disease. Her Arizona Murder Mysteries series features a character with PKD, and a percentage of the books' sales are donated to the Foundation.

Read more

Otsuka Initiates Phase 3 Clinical Trial of Tolvaptan in Patients with ADPKD
Wednesday, June 11, 2014

Otsuka Pharmaceutical Development & Commercialization, Inc., announced on Wednesday, June 11, that patient enrollment has begun for a new Phase 3b study of tolvaptan for adult patients with autosomal dominant polycystic kidney disease (ADPKD).

The company reached an agreement with the FDA on a Special Protocol Assessment (SPA), which is a written agreement on the details of the design and planned analysis for a clinical trial.


Learn more about this long-awaited clinical trial here.

New Study Finds Transplant Recipients with PKD Have Lower Cancer Risk
Monday, June 09, 2014

A new study published in the Journal of the American Society of Nephrology finds that patients with PKD may be less likely to develop cancer than those with other types of kidney disease. Kidney transplant recipients with PKD were 16 percent less likely to develop cancer than recipients without PKD in a recent analysis of 10,166 kidney transplant recipients with PKD and 107,339 without. It's not clear why polycystic kidney disease patients have a lower cancer risk than other kidney disease patients, "but some factor or factors in PKD patients — either inherent in the disease process itself or related to the care PKD patients receive — is associated with lower risks of cancers," Dr. James Wetmore, of the University of Kansas Medical Center, said in a journal news release.

For more information, the article abstract is available here. There is a full-text version available for purchase.

Input Needed From Patients and Advocates Regarding Gap Between Diseases and Treatments
Wednesday, June 04, 2014

The House Energy and Commerce Committee has launched the 21st Century Cures initiative to draw attention to and close the glaring gap between the number of diseases and the number of treatments available. The committee is seeking input from patients and advocates regarding what cures and treatments are available for individual diseases, how they work with researchers and other patients, their experience with clinical trials and what role government has played.

As you are well aware, there is currently no treatment to slow or stop the growth of the kidney cysts that plague generations of families suffering from polycystic kidney disease (PKD). PKD patients only remedies are dialysis and transplantation once their kidneys fail. While life-saving, having a treatment that preserves healthy kidney function is the best option.

We encourage you to send your input on the lack of real treatments for PKD and share your experiences to help Congress move the ball forward. All comments must be sent to by June 13, 2014. Please cc the PKD Foundation at so we can be aware of the input from the PKD community.

Committee Chairman Fred Upton (R-MI) commented, "Ultimately, 21st Century Cures is about patients. Our efforts seek to provide hope to families all across the country. Their invaluable perspective and input in this process is critical and we look forward to partnering together in the months and years ahead as we seek a path to cures."

Learn more about 21st Century Cures here, like the initiative on Facebook, follow along on Twitter and join the conversation using #Path2Cures.

PKD Scientists Gather for Research Symposium
Thursday, May 22, 2014

Earlier in May, nearly 200 PKD scientists and physicians from around the world came together earlier this month at the Jared J. Grantham Symposium on "Future Directions of PKD Research." The PKD Foundation was a major sponsor of the event.

It was PKD Foundation co-founder Dr. Grantham's vision to host a forward-thinking and interactive forum focused on future directions and innovations in PKD research, which was sponsored by the Kidney Institute at the University of Kansas Medical Center, where he spent his career in research and clinical practice. The symposium featured presentations and interactive panel discussions by 12 recipients of the Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease. In addition to a presentation by Dr. Grantham about the future of PKD, topics focused on discovery research and therapy development, including next generation therapies, genetic modifiers in ARPKD and new strategies to block cyst growth. This was the first time the Kaplan recipients were all gathered in one room specifically to present to each other.


Read more


Leading PKD Experts to Present at PKD National Convention
Tuesday, May 06, 2014

The PKD National Convention provides numerous opportunities to learn about PKD from the leading national clinicians, researchers and nephrology experts. The medical professionals and researchers will share their expertise in an easy-to-understand manner and approachable manner, covering everything from PKD research and clinical trials to pain management, transplantation, dialysis and more. Read below to learn more about some of the experts you won't want to miss at the PKD National Convention. To register, visit

Making a Difference for Patients: The Kidney Community Rallies on May 1, 2014
Thursday, May 01, 2014

Jeffrey Miner and Kevin ShortThe PKD Foundation is pleased to give voice to the more than 20 million Americans with kidney disease through its participation in Kidney Community Advocacy Day. Today, the PKD Foundation will join 14 other leading kidney organizations to push for essential change in kidney care. Participants in Kidney Community Advocacy Day will meet with government leaders to discuss two issues that will improve the treatment and quality of life for millions of Americans: increasing federal investment in kidney research, and extending lifetime immunosuppressive drug coverage for kidney transplant recipients.


Read more


Dr. Gregory Germino Will Be Featured Speaker for PKD National Convention
Thursday, April 24, 2014

Dr. Gregory GerminoThe PKD National Convention, taking place June 20-22 in Kansas City, Mo., is fast approaching. The PKD Foundation is excited to announce Dr. Gregory Germino will be the featured speaker for the event. Dr. Germino is the Deputy Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health (NIH). He is a world-renowned expert in inherited kidney disease and a former recipient of a PKD Foundation grant. Read more about Dr. Germino. To register for the Convention to hear from Dr. Germino and other leading experts, visit

Research Grants Awarded
Monday, April 14, 2014

MicroscopeTo support work being done to find treatments and a cure, we have awarded 15 research grants to PKD researchers. We will spend nearly $2.4 million over the next two years on these grants. The awardees represent top researchers and physician scientists throughout the United States, as well as Canada and Italy.

Five of the research grants focus on the development of a treatment for PKD so our patients have something that will slow the progression of the disease. The remaining ten are discovery research, which focuses on understanding the way in which cysts develop or enlarge in PKD. This must be conducted in order to identify cell compounds and pathways before therapy development can be done.

Learn More

Otsuka Pharmaceutical's Samsca® Approved in Japan as the World's First Drug Therapy for ADPKD
Monday, March 24, 2014

(Tokyo, Japan) - Otsuka Pharmaceutical Co., Ltd. (Otsuka) announced it has become the first company in the world to obtain regulatory approval for a pharmacological treatment of autosomal dominant polycystic kidney disease (ADPKD). Samsca® (generic name: tolvaptan) has been approved in Japan in 7.5-mg and 15-mg tablet forms for extended use for the additional indication of ADPKD. Also, the new dosage form of 30-mg Samsca tablets has received approval for the indication of ADPKD.

In Europe, as of December, 2013, an application for regulatory approval of tolvaptan in ADPKD had been received and is under review. In the United States, based on a review issued by the FDA, Otsuka is having continued discussions regarding supplementary data and the path forward for resubmission.

Read the full news release from Otsuka

Gratitude: A Celebratory Benefit for the PKD Foundation
Tuesday, March 11, 2014

Gratitude: A Celebratory Benefit for the PKD FoundationThe PKD Foundation hosted Gratitude: A Celebratory Benefit on March 6 in New York City. The event served to thank and honor some of the many PKD Foundation supporters who have made the Foundation what it is today. Congratulations to our honorees and thanks to all of those who attended. Learn more about the honorees.

Bill and Victoria Brazell were the Benefit Chairs. Retired Giants Offensive Coordinator, Kevin Gilbride, and his wife, Deborah Gilbride, were the Honorary Chairs. Danny Langsdorf, Giants' quarterbacks coach, was a special guest at the event. Langsdorf has a unique connection to the Giants organization, and he knows Gilbride well. Seven years ago, Langsdorf donated a kidney to Laurie Cavanaugh, Gilbride's sister. Cavanaugh is married to Oregon State Offensive Line Coach Mike Cavanaugh. For more information on this connection, check out two national media stories from Newsday and

Transplant Games of America
Tuesday, March 11, 2014

Transplant Games of AmericaThe Transplant Games of America are July 11-14 in Houston. The PKD Foundation will be there and wants to cheer you on and support the PKD families participating! Please visit and let us know about your team and events if you are participating.

The Transplant Games of America is a multi-sport festival event for individuals who have undergone life-saving transplant surgeries. Competition events are open to living donors, organ transplant recipients, bone marrow recipients, and a limited number of corneal and tissue transplant recipients. More than an athletic event, the Transplant Games of America highlight the critical importance of organ, eye, and tissue donation, while celebrating the lives of organ donors and recipients.

To register, visit Once you are registered, visit to let us know about your participation.

Dr. Vincent H. Gattone
Friday, January 31, 2014

Dr. Vincent H. GattoneVincent H. Gattone, Ph.D., anatomist and PKD researcher, passed away on January 26. His research focused on renal cystic diseases, including polycystic kidney disease. His efforts have affected the lives of thousands of PKD patients because he did the initial testing of a tolvaptan precursor in rodent models of cystic disease in early 2002, which has eventually led to the tolvaptan clinical trial.

Dr. Gattone was closely associated with the PKD Foundation for a number of years, serving on our Scientific Advisory Committee for the last six years. He was also the Director of the Electron Microscopy Core at Indiana University School of Medicine, one of the Foundation's Core Labs, and a professor of anatomy and cell biology at Indiana University School of Medicine. He previously held faculty positions at Penn State University and University of Kansas Medical School. Dr. Gattone loved teaching anatomy and research ethics. He received numerous awards and distinctions for research and teaching, most recently the Lillian Jean Kaplan International Prize for the Advancement in the Understanding of PKD, from the PKD Foundation and International Society of Nephrology.

He was passionate about his family. He is survived by his wife of 36 years, Diane, and their five children: Jennifer, Christina, Anthony, Nicholas and Catherine.

To make a tribute gift in honor of Dr. Gattone, visit and select the tribute option at the bottom of the page.

PKD Foundation Launches New Logo, New Brand
Wednesday, January 22, 2014

PKD FoundationWe're kicking off 2014 with a new logo to position the PKD Foundation as a contemporary, forward-looking organization. The new brand will strengthen the mission and visibility of the organization as we work to elevate awareness. More importantly, it will distinguish the Foundation as the leader in the fight to end PKD.

Read more about our new look.

EMA Accepts Otsuka's Marketing Authorization Application for Tolvaptan
Tuesday, January 21, 2014

Otsuka LogoOtsuka Pharmaceutical Co., Ltd. announced in late December that the European Medicines Agency (EMA) has accepted the submission of a marketing authorization application (MAA) for the potential approval of tolvaptan for the treatment of ADPKD in Europe.

The EMA is the European version of the U.S. Food and Drug Administration (FDA) in the United States. An MAA is called a new drug application (NDA) in the U.S.

In the United States, Otsuka and FDA have been working together to determine the most appropriate path forward to allow tolvaptan to be available for patients suffering from ADPKD. In late August of 2013, Otsuka Pharmaceutical Development & Commercialization, Inc. received a Complete Response Letter (CRL) from the FDA regarding tolvaptan to treat adult patients with ADPKD. The FDA issues CRLs to convey that their initial review of an NDA is complete and they cannot approve it in its present form.

Read the official press release from Otsuka.

2014 Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference
Thursday, January 02, 2014

Even though autosomal dominant polycystic kidney disease (ADPKD) is the most common genetic kidney disease, affecting thousands in America and millions worldwide, approaches to the diagnosis, evaluation, prevention and treatment of ADPKD vary widely and there are no accepted practice guidelines for this disease.

KDIGO is holding a Controversies Conference in Edinburgh, United Kingdom, January 17-19, 2014. The purpose of this conference is to address current issues to determine if guidelines in disease management can be drafted. Co-chairs are Vicente Torres (Mayo Clinic, USA) and Olivier Devuyst (University of Zurich, Switzerland). Dr. Torres has a long association with the PKD Foundation.

35-40 clinical experts will be attending the closed meeting (invitation only). For more information, visit

PKD Foundation Attends ASN Kidney Week
Wednesday, November 20, 2013

The PKD Foundation recently funded and attended the American Society of Nephrology's (ASN) Kidney Week Conference in Atlanta. Nearly 10,000 nephrologists, clinicians and researchers from around the world gathered to attend the world’s premier nephrology meeting. Kidney Week provides participants opportunities to exchange knowledge, learn the latest scientific and medical advances, and listen to leading experts in the field.

Read more about the conference

PKD Foundation Welcomes New CEO
Tuesday, November 05, 2013

Jackie HancockThe PKD Foundation is pleased to introduce its new CEO, Jackie Hancock, Jr., CFRE. The Board of Trustees executive search committee put great effort into conducting a national search to identify the right person to lead the Foundation. Jackie will officially start Dec. 2.

Learn more about our new CEO


Homer W. Smith Award Presented at the 2013 ASN Kidney Week Meeting
Monday, November 04, 2013

The 2013 Homer W. Smith Awardee is Stefan Somlo from Yale University. He has a distinguished career as a nephrologist and as well as a PKD researcher. He is also the Vice-Chair of the PKD Foundation's Scientific Advisory Committee. The Homer Smith Award is presented annually to an individual who has made outstanding contributions which fundamentally affect the science of nephrology.

Learn more about the award.

Former Board Member Featured in The Atlantic
Friday, November 01, 2013

Former PKD Foundation Board of Trustees member Bill Brazell shares his PKD story and thoughts on the FDA's tolvaptan decision in an op-ed piece featured in The Atlantic. Read his article here.

PKD Foundation Featured on FOX 4 Morning Show
Tuesday, October 29, 2013

PKD patient Jill Riester and our CMO Angela Connelly were featured on the FOX 4 Morning Show to talk about polycycstic kidney disease and the work of the PKD Foundation. Watch their interview here.

PKD Foundation Chief Marketing Officer Featured on KC Cares
Friday, October 25, 2013

On Oct. 14, Angela Connelly, chief marketing officer for the PKD Foundation, was featured on KC Cares. In the interview, Angela talks polycystic kidney disease 101 and shares how you can help raise awareness and funds. Listen to the interview.

KC Cares is a local radio program, for and about the Kansas City nonprofit community.

PKD Physicians Win National Awards
Wednesday, October 23, 2013

Congratulations to PKD physicians Dr. Ronald Perrone, Dr. William Bennett and Dr. Stefan Somlo who recently won prestigious awards. All three are involved with the Foundation. Learn more about each award.

Dr. Ronald Perrone Wins National Award from the NKF for Excellence in Clinical Nephrology
Thursday, October 03, 2013

Dr. Ronald Perrone was awarded the Donald W. Seldin Award from the National Kidney Foundation (NKF), established to recognize excellence in clinical nephrology in the tradition of one of the foremost teachers and researchers in the field. Dr. Perrone has served on the Scientific Advisory Committee of the PKD Foundation since 1999. He initiated the PKD Outcomes Consortium that is creating the groundwork for validation of total kidney volume as a clinical trial and regulatory endpoint in ADPKD. For more about Dr. Perrone and his award, please click here.

PKD Foundation a Sponsor for Congress of the International Pediatric Nephrology Association (IPNA)
Tuesday, September 03, 2013

Dr. PerroneThe PKD Foundation's scientific meetings program is focused on funding PKD-relevant scientific and clinical meetings that bring together PKD scientists from around the world to discuss current findings and encourage research collaborations. The PKD Foundation also funds education programs at national research/clinical meetings to educate medical professionals in the basic science, genetics, diagnosis, disease management and potential treatments for PKD. The PKD Foundation recently sponsored the 16th Tri-annual Congress of the International Pediatric Nephrology Association (IPNA) held in Shanghai, China. The meeting features workshops on cystic kidney disease, dialysis, hypertension, pathology, patient education, charity activities and rare inherited kidney diseases, including ARPKD. The IPNA is comprised of roughly 1500 pediatric nephrologists and allied professionals representing 89 countries around the world.

FDA Responds to Tolvaptan New Drug Application
Thursday, August 29, 2013

Otsuka Pharmaceutical Development & Commercialization, Inc. announced that they received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) regarding the new drug application for tolvaptan to treat adult patients with ADPKD. The FDA issues CRLs to convey that their initial review of an application is complete and they cannot approve it in its present form. According to Otsuka, the FDA has requested they provide additional information. Next steps will be determined by Otsuka.

Like you, we were hoping for approval and are disappointed to hear this news. We know the PKD community is anxious for a treatment to become available and we share your frustration. We aren't giving up on our mission, and we don't want you to either. This is not the end of finding treatments, but the beginning.

Read more

Tolvaptan Public Hearing Recording Now Available
Thursday, August 29, 2013

We want to thank all who testified and submitted letters (157!) to the FDA's Cardiovascular and Renal Drugs Advisory Committee meeting on Aug. 5 to review the new drug application for tolvaptan. While the Committee voted 9 to 6 against recommending tolvaptan, members were deeply moved by the stories of people impacted by PKD. The recording of the meeting is now available for viewing, including testimonies from the PKD community.

It's important to note that the Committee's outcome was not a final decision. Along with you, we eagerly await the FDA's decision about tolvaptan. Please stay tuned to where we will share timely announcements as we learn them.

Significant Revisions to Deceased Donor Kidney Allocation Policy Approved
Thursday, August 08, 2013

The Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) Board of Directors approved substantial amendments to OPTN policy for deceased donor kidney allocation at their meeting in late June. The changes seek to improve outcomes for kidney transplant recipients, increase the years recipients have a functioning transplant and increase use of available kidneys. The changes are expected in 2014.

Read more about the changes

Breaking News: FDA Advisory Committee Completes Review of Tolvaptan
Monday, August 05, 2013

The U.S. Food and Drug Administration's (FDA) Cardiovascular and Renal Drugs Advisory Committee met on August 5, 2013, to hear presentations from researchers, clinicians and the public. Several people associated with the PKD Foundation spoke about the burden of PKD, and the impact on entire families. The committee repeatedly discussed the burden of the disease, impact of kidney size and the problem of pain.

After hearing these presentations, and reviewing and discussing data, the Advisory Committee voted 9 to 6 against approval of tolvaptan. The FDA is not bound by the committee's guidance but takes its advice into consideration as the agency makes its decision. It is important to understand that this is not a final decision and not the end of the process. The FDA's responsibility is to ensure the safety of drugs and they are conducting the appropriate review of the submission by Otsuka Pharmaceutical Co., Ltd.

Read more

Written Testimonies Needed for FDA Advisory Committee Review of Tolvaptan
Monday, July 15, 2013

On August 5, the Food and Drug Administration (FDA) Advisory Committee for Cardiovascular and Renal Drugs will be holding a special meeting to discuss the new drug application for tolvaptan as a potential treatment for ADPKD. At this meeting, in addition to testimony from researchers and clinicians, the committee will also hear presentations from the public. The PKD Foundation has submitted the names of several individuals who can speak about the burden of having PKD and the impact on generation after generation of families. They will also be testifying that a pharmaceutical treatment option is long overdue, and that dialysis and transplantation shouldn't be the only options for people with ADPKD.

You too can make an impact by submitting your story in writing! The FDA will be accepting written testimonies through Monday, July 22.

Learn how to testify to the committee in writing.

Studies in Mice Suggest Vitamin B3 Holds Promise for Treating Polycystic Kidney Disease
Tuesday, July 02, 2013

Despite decades of research, treatments for polycystic kidney disease remain elusive. Now a new study by KU Medical Center researchers suggests that one mechanism for controlling the ravages of the disease might be found in vitamin B3.

Read the official KU Medical Center news release

PKD Patient Ashley Phelps Featured in Her Life Magazine
Tuesday, July 02, 2013

Her Life Magazine CoverPKD patient Ashley Phelps is featured on the cover of this month's Her Life Magazine! Ashley was diagnosed with PKD in 2010, after the birth of her second son. In the featured article, she talks about her day-to-day challenges of living with the disease.

Read her inspiring story

PKD Foundation Announces Board of Trustees, Condella will Serve as Chair
Monday, July 01, 2013

KANSAS CITY, Mo. – The PKD Foundation has announced its Board of Trustees for the 2013-2014 fiscal year. Frank C. Condella, Jr. will serve as chair.

Condella lives in Andover, Mass. He is currently president, CEO and director of Columbia Laboratories, Inc. as well as the non-executive chairman of Skyepharma, PLC. Condella’s career spans 35 years working in both privately and publicly held companies, all of which were involved in the life sciences industry. His experience in the pharmaceutical industry includes having worked in senior management roles for several major international companies. Condella is active with the Northeastern University Health Sciences. He holds a bachelor’s degree in pharmacy and an MBA from Northeastern University in Boston.

Other elected officers of the board include:

  • Benjamin D. Cowley, Jr., M.D. – Vice Chair, University of Oklahoma Health Sciences Center Oklahoma City, OK
  • Blaise Hazelwood – Treasurer, President, Grassroots Targeting, Alexandria, VA
  • Jerome T. Lienhard, II – Secretary, SunTrust Mortgate, Inc., Atlanta, GA

For a full list and further information about the PKD Foundation Board of Trustees and its members, visit

About the PKD Foundation
The PKD Foundation is dedicated to finding treatments and a cure for polycystic kidney disease (PKD), to improve the lives of those it affects. We do this through promoting research, education, advocacy, support and awareness. Our goal is that one day no one will suffer the full effects of PKD. For more information about PKD and the PKD Foundation, visit or call 1.800.PKD.CURE (800.753.2873).

Two Top Doctors Dedicated to Ending PKD Honored
Tuesday, June 11, 2013

Dr. Vincent Gattone and Dr. Dorien Peters have been awarded the Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease (PKD). The award is a partnership between the PKD Foundation and International Society of Nephrology (ISN) and recognizes a medical professional or researcher exhibiting excellence and leadership in PKD research and whose work demonstrates tangible achievement toward improving knowledge and treatment of PKD.

Read the official news release

PKD Foundation Announces Request For Application for Research Grant Funding in PKD
Thursday, June 06, 2013

The PKD Foundation announced the release of a Request For Application (RFA) for research grants in polycystic kidney disease. This is a two-year award for $80,000 for a total of $160,000. It is anticipated that 12 two-year grants will be funded.

Applicants must have an M.D. or Ph.D. degree and hold a faculty appointment at the institution where the research will be conducted. Applicants need not be United States citizens. No fellowships will be awarded under this RFA, although salary for a fellow may be included.

Read the requirements and view the RFA

Transplant Patient and Donor Reunited
Thursday, May 23, 2013

Big hearted Scott Dudley, the mayor of Oak Harbour, had vacation plans interrupted last spring. With time on his hands, the dedicated Rotarian decided to drop in on the meetings of some neighbouring clubs. That took him to Meadow Gardens Golf Course for the meeting of the Rotary Club of Haney. While there, he heard club president elect Keesha talk about her husband Phil's health trials. He had polycystic kidney disease. Down to 16 per cent kidney function, he needed dialysis to remove toxins from his blood, until an organ donor could be found. He was always exhausted, never far from the couch.

Read Phil and Scott's story in the Maple Ridge News

Lyndon Baty and the Robot That Saved Him
Thursday, May 16, 2013

Lyndon BatyIn tiny Knox City, a sick boy and his robot sidekick keep beating the odds.

Lyndon was born with polycystic kidney disease (PKD), a genetic condition that results in cysts on the kidneys. It's the most common life-threatening genetic disease in the world, but because Lyndon is Lyndon he was born with the rarer form of the disease, autosomal recessive polycystic kidney disease, the kind that appears in children. Louis and Sheri are both carriers for the mutated gene, which gave Lyndon a 50/50 chance of inheriting the disease. About 70 percent of babies born with recessive PKD survive their first year. But back when Lyndon was born — six weeks early, with two pounds of fluid in his chest and cyst-covered kidneys that couldn't filter — his doctors gave him two years to live. Most newborns in his condition don't live two weeks.

Read Lyndon's story in the Dallas Observer News

Overview Document About PKD and the PKD Foundation
Thursday, May 16, 2013

Polycystic kidney disease (PKD) is one of the most common, life threatening genetic diseases affecting thousands in America and millions worldwide. PKD causes fluid-filled cysts to grow in the kidneys, eventually leading to kidney failure. Parents have a 50 percent chance of passing it to their children meaning PKD often affects many people in one family.

The PKD Foundation is dedicated to finding treatments and a cure for PKD to improve the lives of all those it affects. Our goal is that one day no one will suffer the full effects of PKD. Learn more about this disease and how we're working to end PKD.

New PKD Progress Available Online
Thursday, May 16, 2013
PKD Progress Magazine

In this issue:

  • Message from the CEO: tolvaptan and drug repurposing momentum
  • Research: Core research grants program promotes PKD research by supporting core labs
  • Education: Providing compassion, connections and education for parents of children with PKD
  • Advocacy: United on the Hill and how you can make a difference locally year-round
  • Support: Unite to fight and Walk for PKD
  • Awareness: Updated Progress and homepage improvements

Read the full issue
Sign up to receive PKD Progress

Kidney Transplant Helps Auburn Resident Find New Purpose
Thursday, April 18, 2013

Valen KeeferThe colors blue and green will carry a message on Friday, and an important one for Auburn resident Valen Keefer as a messenger of the cause that saved her life.

April 19 is National Blue and Green Day, so named for the colors of Donate Life, a non-profit coalition of advocates for organ and tissue donation across the country.

Read the rest of Valen's story in the Auburn Journal

Tolvaptan Special Update: Accepted for Priority Review by FDA
Friday, April 12, 2013

A major announcement was made today by Otsuka Pharmaceutical Co., Ltd. that the U.S. Food and Drug Administration (FDA) has accepted for priority review the company's new drug application (NDA) for the potential use of tolvaptan for the treatment of autosomal dominant polycystic kidney disease (ADPKD).

Read more and view the official press release

See How We're Fighting ARPKD
Tuesday, April 02, 2013

See How We're Fighting ARPKDAutosomal recessive polycystic kidney disease (ARPKD) is a relatively rare form of PKD that affects 1 in 20,000 children and often causes mortality in the first month of life. About 70% of children survive the newborn period but approximately one-third will need dialysis or transplantation by at 10.

ARPKD is a disease that devastates families and dramatically affects quality of life for children who have it. Because of this, the PKD Foundation provides focused funding for ARPKD-related research, support and education. Read the latest report to see how we're fighting ARPKD.

Sara Mann and Billy Ray Cyrus Team Up on Kidney Awareness Month Album
Tuesday, March 19, 2013


The fight against cancer is an omnipresent struggle. There are marches, product branding and celebrities who have banded together to "find the cure." But what about other serious diseases that are left in the dark? Singer/Songwriter Sara Mann has teamed up with Billy Ray Cyrus on a mission to raise funds and awareness for Polycystic Kidney Disease (PKD). Sara's story is not an easy one for her to tell.

After losing a child to ARPKD (Autosomal Recessive Polycystic Kidney Disease), and being diagnosed at the time she was ready to give birth to twins, she decided she had to share her story, and do what she could to raise awareness about kidney disease.

Read more

Mayo 2013 Summer Student Research Program
Thursday, January 10, 2013

Sponsored by: NIH through the Mayo Translational Polycystic Kidney Diesase Center (MTPC).

The MTPC has established a program to allow up to six students to study in a PKD laboratory or be mentored in PKD-related clinical research at Mayo Clinic. Undergraduates who will be juniors or seniors after next summer and are undertaking a science-based major are encouraged to apply. The appointments run from May 28 - August 2, 2013 and each appointee will be awarded a $5,000 stipend.

Learn more and see how to apply. The deadline for applications is February 1, 2013.

Message From Our CEO - 2013: The Year of Hope for the PKD Foundation
Monday, January 07, 2013

As 2013 begins, we can look back with much pride and a sense of accomplishment over the past year. The PKD Foundation experienced a milestone, celebrating 30 years of service to PKD patients and their families across the country. Over these years, the original seed of hope has fully germinated, resulting in heightened optimism about what can occur in the future, through strategic and dedicated work to find a treatment and ultimately a cure for this terrible disease.

Read more

PKD Foundation Shares Position on Proposed Changes to Kidney Allocation Policy
Wednesday, December 05, 2012

The United Network for Organ Sharing (UNOS) recently issued proposed changes to the deceased donor kidney allocation policy. These changes are seeking to improve outcomes for kidney transplant recipients and increase utilization of available kidneys. The proposal is open for public comment through Friday, December 14. The PKD Foundation's Scientific Advisory Committee (SAC) reviewed the proposal and developed an official position.


Read more


It's #GivingTuesday
Tuesday, November 27, 2012

#GivingTuesday#GivingTuesday is a social media movement to create a national day of giving at the start of the annual holiday season. Join the PKD Foundation in the fight to end PKD by donating $10 through our text-to-donate program.

Join us Today!


Mother Turns to Facebook for Kidney Transplant
Monday, November 26, 2012

A Dracut mom who needed a kidney transplant turned to Facebook for help. Not only did she get the transplant, but she also now has a lifelong friend.

Read more

Couple Brings NYC Marathon Home to DeLand, Storm Can’t Stop These Runners
Monday, November 19, 2012

Matt and Erin Thompson of DeLand, Florida planned on participating in New York City Marathon on November 4 with Matt's brother Adam and sister-in-law Amber. They registered as part of the PKD Foundation marathon team, and agreed to help raise money for research for ways to beat polycystic kidney disease (PKD), which both Matt and Adam have.

Hurricane Sandy quashed their plans, but not their determination. Read how they were able to run to run the 26.2-mile race in honor of their father, Tommy Thomspon.

Special Announcement About Tolvaptan
Saturday, November 03, 2012

A major announcement was made by Otsuka Pharmaceutical Co. on Saturday, Nov. 3, 2012 at the American Society of Nephrology (ASN) meeting regarding the results of the Tolvaptan Efficacy and Safety in Management of Autosomal Dominant Polycystic Kidney Disease Outcomes (TEMPO) Trial.

This is the first time that a drug specifically targeted to alter ADPKD progression in humans has been shown to be of benefit. This is an exciting milestone for PKD patients and the Foundation.

Learn more here.

OPTN Kidney Allocation Policy Webinar - November 7, 2012
Thursday, October 25, 2012

UNOS - Donate LifeThe chair of the OPTN/UNOS Kidney Transplantation Committee will address proposed changes to the OPTN kidney allocation policy that are currently out for public comment. The proposed policy would maintain access to kidney transplantation for all candidates while seeking to improve outcomes for kidney transplant recipients, increase the years recipients may have a functioning transplant and increase utilization of available kidneys. Learn more about this webinar here.

To register for this webinar or learn more about other upcoming webinars click here

Los Angeles Walk for PKD Featured on KTLA 5
Thursday, October 11, 2012

KTLAThe 2012 Los Angeles Walk for PKD was recently featured on KTLA 5 as part of their Health Smart segment. You can watch the video here.

UNOS Issues Proposal to Amend Deceased Donor Kidney Allocation Policy
Tuesday, October 02, 2012

The United Network for Organ Sharing (UNOS) has issued a proposal to amend the deceased donor kidney allocation policy. The long-awaited proposed policy changes would maintain access to kidney transplantation for all candidates while seeking to improve outcomes for kidney transplant recipients and increase utilization of available kidneys. To read a summary of the key points of the new allocation policy, click here. To read the full proposal, click here or for frequently asked questions, click here.

To submit a comment about the proposal, click here to visit the Public Comment section of the OPTN website and click on policy #1. The deadline for public comment is December 14, 2012.

More information about this proposal will be posted as it becomes available.

Fun Run for Awareness of PKD
Thursday, September 20, 2012

The North Texas Walk/Run for PKD was recently featured on Good Morning Texas. Carolyn Morris and Sally Wilson shared some information about PKD and the upcoming North Texas Walk/Run for PKD. You can watch the interview here.

Families with Genetic Kidney Disease Walk to Find a Cure
Wednesday, September 12, 2012

Patti O'Grady Ruffin, the San Antonio Walk for PKD coordinator, stopped by Great Day SA to talk about PKD and to promote the chapter's upcoming Walk for PKD event. She was joined by Dr. Rudy Garza, Nephrologist at the San Antonio Kidney Disease Center, and Amanda Jaska and her son, Gus, who has ARPKD. You can see the interview here.

KSHB’s Midday Show Interviews Local PKD Chapter Coordinator and Daughter
Tuesday, September 04, 2012

Nicole Harr, Kansas City chapter coordinator and her daughter, Emily, appeared on Kansas City’s NBC-affiliate KSHB to promote their local Walk for PKD. Nicole and Emily did a fantastic job in helping raise awareness of the annual event. Watch the interview here.

Online Radio Talk Show Interviews CEO of the PKD Foundation
Wednesday, August 22, 2012

Gary GodseyRenal Support Network’s online radio talk show, KidneyTalk, recently interviewed Gary Godsey, CEO of the PKD Foundation. In the podcast, Gary provides an overview of polycystic kidney disease and explains what the PKD Foundation is doing to help find treatments and a cure. You can listen to the interview here.

Longtime PKD Foundation Friend Medals in Transplant Games
Wednesday, August 15, 2012

Longtime PKD Foundation friend and former Board of Trustees Advisory Committee member, Tom Elias, participated in the Transplant Games of America recently and came home a medalist. He's been participating in the Games since 1998 - just nine months after his kidney transplant. Read the article, here.

PKD Foundation Announces New Chief Marketing Officer
Wednesday, August 08, 2012

We're pleased to announce Angela Connelly as our new Chief Marketing Officer. Learn more about Angela and why she's a great fit for the PKD Foundation here.

Modified Rapamycin Shows Promising Results for Polycystic Kidney Disease Model
Monday, August 06, 2012

Scientists at University of California - Santa Barbara have demonstrated in the laboratory that modification of the drug rapamycin, often used as a post-transplant anti-rejection drug, is effective in treating polycystic kidney disease (PKD) in cystic animal models. Read more here.

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Phone: 800.443.9441 | Fax: 843.216.6100

©2015, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2015, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.