News

In 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

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.

The 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

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

Autosomal 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.

RYOT NEWS

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

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.

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

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

#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!

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

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.

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.

The 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. 

The 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.

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.

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.

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.

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.

Renal 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 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.

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.

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.