Walking in Atlanta & Boston; Wearable Dialyis Machne Receives FDA Approval for Testing

Walking for PKD

From Dan, Member Atlanta Chapter, PKD Foundation

Annual PKD Walk in Duluth, Georgia, October 11

Join us at the Annual PKD Walk in Duluth, Georgia, just north of Altanta.  We will be lending our support to the PKD Foundation in its unique efforts to promote research to find a cure for PKD and improve the care and treatment of those it affects.  As the PKD Foundation states, "A Cure is our finish line."

Once viewed as a hopeless incurable genetic disorder, PKD has emerged as a prime target of study and treatment.  Dan has just completed a five year double blind study of a new medication for PKD, conducted in Colorado and Georgia.  Fear, denial, and especially ignorance of the disease are still the greatest obstacles for a cure.  The PKD Foundation works to advance all areas of PKD research, education and information.  Six hundred thousand Americans and 12,5 million people worldwide, are affected.  That makes PKD the single most common life-threatening genetic disease, globally.

The URL to contribute online is http://walkforpkd.kintera.org/atlanta/pkd1017

Any amount you can contribute will further the cause to find a cure.

 From WCVB.com local ABC affiliate, Boston, MA, by Kathy Curran

Wake up call: Walk for PKD

Video Transcript: I'M WCVB'S KATHY CURRAN. WE'RE HERE AT THE BOSTON WALK FOR P.K.D., POLY-CYSTIC KIDNEY DISEASE. IT'S A GENETIC DISEASE. THERE IS NO CURE. PLEASE CHECK OUT P.K.D. DOT-ORG. WHAT DO WE WANT TO SAY? GOOD MORNING, "EYEOPENER." GOOD MORNING TO ALL OF YOU OUT THERE. "TEAM FIVE INVESTIGATES" KATHY CURRAN KICKED OFF THE BOSTON WALK FOR P.K.D, POLY-CYSTIC KIDNEY DISEASE. THE LIFE-THREATENING GENETIC DISEASE STRIKES BOTH ADULTS AND CHILDREN. THE WALK RAISES MONEY FOR RESEARCH IN THE HOPES OF ONE DAY FINDING A CURE. GREAT CAUSE.  [Read more]

Living with PKD

From Mirror, United Kingdom, By Olivia Solon

It looks like a utility belt, but it's a kidney dialysis machine

The Wearable Artificial Kidney lets patients with kidney disease receive dialysis on the move

Medical researchers have developed a miniature dialysis machine that can be worn on the body to filter the blood of people whose kidneys have stopped working on the move.

The Wearable Artificial Kidney is worn around the body like a bulky utility belt and connects to the patient via a catheter. It weighs just five kilograms and runs on batteries.

“My team invented the device to untether patients from large dialysis machines,” said Dr Victor Gura from the University of California, who developed the device. His research group wants to give people with late-stage kidney failure the freedom and mobility to walk or go shopping while having their dialysis.

Typically, patients receiving dialysis must stay in one place - attached to bulky machines - while their blood is filtered. Sessions of dialysis must happen three times a week for four hours a time.

The new device has been made possible thanks to lighter, more durable batteries and a new type of pump.

So far the device has been mainly tested on animals, but it’s just got the approval from the US Food and Drug Administration to start proper testing on humans.  [Read more]

Story continuation: From HealthCare Inc, Northwest, by Annie Zak

Wearable tech goes to the doctor: UW to test 'wearable' artificial kidney

Trials of the wearable artificial kidney have already been done in Europe, but this is the first test in the U.S. and the first time the test will run for an entire 24-hour period. Patient volunteers will be recruited locally in Seattle and the trial, which was approved in February by the Food and Drug Administration, will last for at least 28 days. The goal is for 10 patients to complete the full trial. [Read more]

From WDSU.com, Channel 6, covering south Louisiana

40-year-old Saintsation, mother of 2 sharing story of kidney disease on 'Steve Harvey Show'

One of our very own Saintsations is making an appearance on daytime television Wednesday.

Kriste Lewis is a 40-year-old married mother of two whose duties also include professional NFL dancer for the New Orleans Saintsations.

Check Out: Saintsations Ready for Some Football

And on Wednesday, Lewis will appear on the Steve Harvey show to talk about her battle with polycystic kidney disease, a condition she was diagnosed with 14 years ago.

Watch: 40-Year-Old, Mother of Two Becomes Newest Saintsation

Lewis will share her story about how she made the decision to get fit and begin crossing things off her bucket list. One of those was making the Saints cheerleading squad after six months of training.

Gift of Life

From South Dade News Leader, by Patrick Sicher

South Dade Teacher Mario Morales Receives Life-Saving Kidney Transplant

The curious thing about certain genetic disorders is the fact that for a lucky percentage, the disease may never manifest itself. For others though, it becomes more a matter of when, and not if. For South Dade High School Science Teacher Mario Morales, his “when” was just months shy of his 50th birthday.

Morales inherited a condition called Polycystic Kidney Disease (PKD), a genetic disorder that causes multiple cysts to develop in both kidneys, necessitating dialysis and eventually a transplant. Being born with PKD never prevented him from doing anything, Morales served several years in the Marine Corps and has been involved in athletics and coaching his whole life.

From Petersburg Pilot, Petersburg Arkansas, By Mary Koppes

Making sisters out of strangers:

A kidney transplant brings two Petersburg women together

Long-time Petersburg residents Joey Doyle and Beth Richards were small-town strangers before an unlikely event brought them together last year.

"I kind of knew who she was, but we had never really socialized or anything like that," Doyle said. "We're sisters now."

Not unlike twins, they solidified their sisterhood in a hospital room. But Doyle and Richards don't share a mother, they share an organ. It was a kidney transplant that brought them together.

Joey has polycystic kidney disease (PKD), a genetic disease that causes cysts to form on the kidneys, decreasing their function over time and causing other health problems like high blood pressure.

Joey inherited the disease from her mother who passed away at age 34 from a cerebral hemorrhage. At the time Joey was 10, the oldest among her three siblings.

"I don't think they realized that she had the disease at the time," Joey said. They later found out she had PKD which is linked to such hemorrhages.

After identifying the disease, Joey and her siblings learned that there is a 50 percent chance of inheriting the disease from a parent who has it.

"They thought that any one of us could have it," she said.

The first sign that Joey had PKD showed up in her late twenties in the form of high blood pressure, a common first symptom of the disease. The problem was exacerbated by the increased strain on her body from pregnancy. "It got so bad with my second child, he actually was a C-section baby." Since then Joey's been on progressively more and stronger medication to help regulate her blood pressure.

As the years passed Joey raised her children with her husband George and worked in the Petersburg elementary school as a reading specialist. Along the way the cysts on her kidneys grew and her kidney function was slowly decreasing.

In her daily life Joey continued taking medication to regulate her blood pressure, but she skirted another common symptom of PKD.

"I was very fortunate, I never had any pain, but many, many, many people with this kidney disease have a lot of pain," she said. Flank pain and cyst pain can both be caused by the growing cysts on the kidneys.

Joey tried to lead as healthy a life as she could, but the inevitable eventually happened.

"Being a healthy person can only last so long before you have to do something about it," she said. "By the time I was 50 they're saying 'ya know, you're gonna have to start thinking about this because you're going to need a transplant or something.'"

Late in 2011, Doyle wrote a letter explaining the disease and her need for a kidney donor. Her letter was published in the Petersburg Pilot and she also sent it out in her annual Christmas cards to friends and family.

People started coming forward from near and far to begin the lengthy process of tests and procedures. In town, Angel Worhatch was among the first people to begin the process. After going through several sets of tests, Angel made it as far as the final testing at Virginia Mason hospital in Seattle in 2012.

"She's the one that got the closest before Beth," Joey said. "She actually went down and went through the testing only to find out that there was something minorly wrong."

Though the minor problem wouldn't affect Angel's health, it meant she wasn't able to donate her kidney to Joey.

After Joey's initial letter in the paper, Petersburg Pilot publishers Ron and Anne Loesch ran a weekly classified ad saying that Joey was in search of a kidney and providing contact information for interested potential donors.

Locally the ad raised awareness and many people came forward, making it through various stages of testing. But as the days passed in 2012, no perfect match had been found.

Joey said she experienced the ups and downs of hope and disappointment as people came forward and began, and eventually ended, the process.

"You're afraid to even think that this could possibly happen, practically until the day of surgery," she said, though she tried to keep her faith by praying and repeating what became her personal mantra "have the faith, keep the faith."

Meanwhile a chance encounter prompted Beth to make a call she'd long been thinking of making. [Read more]

Its Time to Walk for PKD, Walking New Zealand

Walking for PKD

From Sault Star, Sault Ste. Marie, Ontario, Canada, By Brian Kelly, Sault Star

Dialysis patient grateful to be alive

There's lots of ways kidney disease has affected Christina Palmer's life.

She wants other people to know a little bit more about the condition that forces 9,800 Ontario residents to get dialysis.

Diagnosed with polycystic kidney disease at 19, the Bruce Mines resident started doing eight hours of dialysis daily in March 2013.

“It's a long process,” said Palmer, 43. “It sure takes a lot of your time, but at least I'm alive.”

She wants to get a kidney transplant, but acknowledges her health has to improve and she has to be mentally prepared before that operation can happen.

Declining health forced her to quit her job as a cashier at Heritage Home Hardware in Bruce Mines in mid-August.

“(There's) lots going on with me,” said Palmer Saturday before the start of the 11th annual Kidney Walk at Roberta Bondar Pavilion.

She hopes the fundraiser, held provincewide in 43 communities, helps build awareness about a disease that affects, or has the potential to impact, 1.5 million Ontario residents.

“People just need more knowledge,” she begins, before her stepmother Mimi Bouchard adds “to know what people are experiencing with this disease.”

Palmer's kidney disease is hereditary. Her mother and her two sons also have the genetic kidney disorder.

Palmer and Bouchard were part of a team, 50 Rocks, at the weekend fundraiser. Team captain Shirley Pulkkinen is a social worker at Sault Area Hospital's renal unit. She's also a member of Kidney Foundation of Canada's Ontario board.

Her team, with a monicker chosen to reflect the association's 50th anniversary and her 50th birthday this year, was made up of dialysis patients such as Palmer, family members and health-care professionals.

An 11-year-old granddaughter of one team member donated $5 from her allowance in honour of her grandfather. [Read more]

From The Scoop, New Zealand

Kidney Donor Walks New Zealand For Cause


A Whangarei woman, who donated a kidney to her husband, is setting off today to walk the length of New Zealand to encourage others to donate their organs.

There are currently 170 Northlanders undertaking dialysis to keep them alive. Of these, 36 are medically suitable to be listed on the national kidney transplant list and are waiting for a suitable donor.

The main cause of kidney failure in New Zealand is diabetes. Northland statistics from 2011 show that 32.2 per cent of Maori were affected by diabetes, 1.7 per cent of Pacific Islanders and 66.2 per cent of other nationalities.

Currently 71 Northlanders have had a functioning kidney transplant and Hugh Cole-Baker is one of these, thanks to the generosity of his wife Ros.

Mr Cole-Baker struggled with kidney disease for 10 years, resulting in renal failure and the need for dialysis, before his wife donated one of her kidneys last year.

The transplant was a success and, with Hugh’s new lease on life, the couple are passionate about reducing the waiting list of the 600 New Zealanders in need of a transplant.

Says Mrs Cole-Baker: “The only way to avoid dialysis is to have a kidney transplant from a deceased donor or a living person. Donating a kidney will make a real difference to the life of a person with kidney disease. In the words of one donor, ‘You'll never do anything better than donate a kidney’.”

The Hugh-Bakers, who run a Whangarei Heads-based bed and breakfast, set off from Cape Reinga today to undertake the Te Araroa Trail with Mrs Cole-Baker walking and mountain biking and Hugh arriving at each destination via campervan. At each stop they plan to share the facts about live kidney donation and the benefits of a healthy lifestyle, conducting talks in towns and handing out brochures

They aim to be in Wellington by Christmas and are allowing up to five months to reach Bluff. [Read more]

From The Daily Observer, Pembroke, Ontario, Canada, by Sarah Hyatt

Pembroke kidney walk kicks off Sunday

In the last two decades, the number of Canadians being treated for kidney failure has more than doubled.

Each day, an average of 15 people are told that their kidneys have failed.

The disease, often referred to as 'silent killer,' usually starts slowly and progresses over a number of years.

According to the Kidney Foundation of Canada, as many as 600,000 Canadians may be at risk right now, and not know the signs of the disease - because kidney disease describes a variety of diseases and disorders that affect the kidneys.

However, most diseases of the kidneys ultimately do the same thing and attack the filtering units of the organs or what are also known as nephrons. The attack damages the nephrons' ability to eliminate wastes and excess fluids.

The two most common and preventable causes of end-stage kidney disease are diabetes and high blood pressure, although some kidney diseases like polycystic kidney disease, for instance, are also inheritable.

The scarier truth is kidney disease can strike anyone at any time and at any age.

There's no cure. And when kidneys fail, dialysis treatment or transplants are the only option for those suffering.

This weekend, however, people here in Pembroke have the chance to make a difference. People here have the chance to help increase awareness.

"There are several ways kidney disease can affect someone," Heather Sutherland, one of the organizers for the Pembroke Kidney Walk said. "Increasing awareness has never been more important," she added.

This weekend's walk will take place on Sunday. Registration is at 1 p.m. and the walk begins at 2 p.m. at Pembroke's Waterfront Riverwalk Amphitheatre.

Sunday is the only day dialysis isn't offered at local hospitals, Sutherland explained. That's why the walk for the last eight years or so always take place on the Sunday, so patients can participate too.

"Our family, as many know, has a personal connection to kidney disease," Sutherland went on to say. "But the truth is kidney disease affects a lot of people. More than people may know. One in 10 Canadians have kidney disease and millions more are at risk. Those are pretty intense statistics."

The kidney walk, which takes place in communities across the province, is the Kidney Foundation of Canada's largest fundraiser of the year, Sutherland added.

Dialysis is offered in Pembroke, Renfrew and Barry's Bay so kidney disease is not just a problem elsewhere in Canada, Sutherland pointed out. "It's an issue here in our communities," she said.

On Sunday, it's about celebrating the wins and also taking the steps towards a better future for so many struggling and for those who will struggle with kidney disease, Sutherland explained.

The goal for the Pembroke non-competitive walk is to raise $12,000. More than $4,700 has been raised as of Sept. 17. [Read more]

From Herald Argus, LaPorte, Indiana

Families unite in effort to end genetic kidney disease

This year, Jeff and Laura Moyer of La Porte, as well as thousands nationwide, will come together and walk in support of those affected by polycystic kidney disease.

PKD is one of the most common, life-threatening genetic kidney diseases affecting thousands in America and millions worldwide. It is the fourth leading cause of kidney failure, and there is no treatment or cure.

The 2014 Northern Indiana Walk for PKD is planned for Saturday at Creek Ridge County Park with PKD patients, their families and friends fundraising and walking together to unite to fight and end PKD. Registration is at 9 a.m., with the Walk beginning at 10 a.m.

Jeff and Laura Moyer participate in the Walk for PKD for Laura's immediate family (15 of them including Laura herself), who has Autosomal dominant polycystic kidney disease.

Learning about ADPKD and how to care for has been difficult at times prior to Laura's Transplant in 2011. Her daily care requires multiple medications, monthly labs, etc. all caused by ADPKD.

Despite the challenges, the Moyer family counts their blessings daily in having a happy, beautiful life and family.

The annual Walk for PKD is the signature fundraising and public awareness event for the PKD Foundation and is the largest gathering of PKD patients, family, friends and supporters; more than 11,000 strong.

More than 50 walks occur every year in cities across the nation. Since 2000, the Walk for PKD has raised nearly $22 million.

This money raised supports the PKD Foundation's efforts to fund research to find treatments and a cure, and to provide information and support to people affected by PKD.

"The Walk for PKD is an opportunity for our family to raise awareness and money for research and to support other families going through the same thing," Laura Moyer said. "The idea of being able to do something for future generation means more than I can say." [Read more]

Living with PKD, Start a Conversation

Ottawa Magazine, Canada, PKD Foundation of Canada

PKD: Time to Start a Conversation

Polycystic Kidney Disease (PKD) is one of the most common, life-threatening genetic diseases. Sadly, conversations surrounding the disease are very uncommon. Jeff Robertson, Executive Director, PKD Foundation of Canada and Arie Pekar, PKD patient and transplant recipient, share their stories. Visitwww.endpkd.ca to learn more.

From The Legal Record, Johnson County Kansas, By GILES BRUCE

Teacher’s organ donation inspires others

You wouldn’t guess from looking at the two men that they underwent organ transplant surgery earlier this year. But that’s just what Lawrence middle school teachers Scott Forkenbrock and Mike Wormsley did, when Forkenbrock donated a kidney to his colleague in January.

Nine months later, they’re both back teaching at Liberty Memorial Central Middle School. Wormsley no longer needs dialysis, and Forkenbrock has returned to his physically active lifestyle.

Forkenbrock’s generous act is even inspiring others. After a friend heard about what he did, she decided to run the New York City Marathon in November by raising money for the PKD Foundation, which spreads awareness about the kidney disorder that had Wormsley on the transplant waiting list before his co-worker came to the rescue.

“It was nothing I’d ever heard of anyone doing before,” said Amanda Wittman, 30, an Olathe sign-language interpreter who has pledged to raise $3,500 for the PKD Foundation in order to run the marathon, which her husband and Forkenbrock and his wife will be participating in as well. “You read about it with family members and loved ones, but to donate a kidney to a co-worker, I was just amazed. After seeing him go through that surgery, I feel honored to know him.”

Forkenbrock, 43, acts like it’s no big deal. He did the research ahead of time and found out he could donate a kidney and be back to 100 percent in a matter of months. He was more concerned about Wormsley, who hadn’t been himself after experiencing kidney failure two years ago. He had no energy, could only work part-time and was considering early retirement, all due to polycystic kidney disease, a hereditary condition that causes cysts to develop on the kidney.

After successfully undergoing the transplant at Kansas University Hospital in January, the two men were back to teaching within seven weeks. And nine months later, Wormsley is his old self again.

“I feel like I’m pretty much back to where I was before my kidney shut down,” the 62-year-old said on a recent day at the Lawrence middle school. “I’m working full-time. My energy is up. My health is good.” [Read more]

Tolvaptan Research Update, PKD Walks, Dialysis Solution Shortage

PKD News

From PRUrgent, PKD Foundation of Canada. Hamilton Chapter

Local Nephrologist to Give Update on Polycystic Kidney Disease Research Nephrologists are working towards an improved understanding of how to prevent the progression of kidney disease. Dr. Scott Brimble MD FRCPC will discuss potential therapies for polycystic kidney disease (PKD). FOR IMMEDIATE RELEASE Recently, research has shown that a drug called Tolvaptan can dramatically slow the development and progression of polycystic kidney disease (PKD) in animal models, and another drug (octreotide) can delay the development of both PKD and polycystic liver disease and may prove to be a potential treatment option for people with liver involvement. Dr. Scott Brimble will discuss these among other potential therapies in his presentation on September 28 in Classroom B of the Juravinski Innovation Tower at St. Joseph's Healthcare Hamilton. The Hamilton Chapter of the PKD Foundation of Canada hosts free informational support meetings six times a year for PKD patients, their families, friends and caregivers. A research overview is offered annually to help members remain current on PKD research developments and so that newly diagnosed patients can learn about the progress science is making to halt this inherited disease. PKD affects an estimated 1 in 500 people worldwide. [Read more]

From PKD Foundation of Canada

Register Today for the 2014 PKD National Symposium

We’re excited to announce that we will be hosting Canada’s very first PKD Symposium on Saturday, November 22nd! The 2014 PKD Canadian Symposium is open to the public, and will include participants from the PKD medical community and various renal healthcare centres, as well as PKD patients, their families and loved ones.

With the Foundation’s support and that of our partners, we are planning a day filled with valuable information and subject matter relevant to those affected by polycystic kidney disease. We will be hearing from top Canadian and International Key Opinion Leaders in the field; learning about important ways to manage various aspects of one’s PKD diagnosis.

Topics will include:
Eating Healthy with PKD
Learn the Facts: The Basics of ARPKD & ADPKD
Understanding Living Kidney Donation
Update on Canadian Clinical PKD Research
Dealing with the Emotional Aspects of Living with a Chronic Disease

Light breakfast, snacks, lunch and beverages will be provided throughout the day. There is no fee to attend, but we do ask that you register online no later than October 17th

.
We look forward to seeing and hearing from you during the 2014 PKD Canadian Symposium, as we work together to improve PKD awareness and patient care.

Dialysis Concerns

From Los Angles Times, By STUART PFEIFER, CHAD TERHUNE

Shortage of in-home dialysis solution has patients worried
"We definitely consider this a critical situation. The FDA is doing everything we can to address the problem."
- Valerie Jensen, associate director of the Food and Drug Administration's drug shortage program

Unlike the hundreds of thousands of Americans who drive several times a week to a dialysis center, Joanna Galeas relies on an increasingly popular at-home alternative to treat her kidney failure.

Galeas, a 30-year-old Los Angeles resident, is among tens of thousands of U.S. residents who use peritoneal dialysis at home. She fills her abdomen with a sterile solution that helps remove toxins from her blood, a function ordinarily performed by healthy kidneys.

Now, Baxter International Inc., the nation's leading supplier of the home dialysis solution, says it can't keep up with demand and has started rationing the product, directing physicians to limit the number of new patients to whom they prescribe the treatment and reducing the size of shipments sent to existing customers.

Last week, Galeas' shipment of the lifesaving solution didn't arrive, she said. When she was down to her final dose, Baxter made an emergency shipment to her home.

"I was freaking out all weekend until Monday when it arrived," she said.

Baxter, based in Deerfield, Ill., blamed the shortage on an unexpected increase in demand, which it said has outpaced its ability to produce the solution. The company said that the number of U.S. patients using dialysis solution increased 15% in the second quarter compared with a year earlier and that demand for the product "has never been stronger."

The shortage comes as a record number of people in the United States rely on dialysis because their kidneys failed; the U.S. dialysis population has more than doubled since 1995 to more than 400,000. [Read more]

PKD Awareness From Bedford Daily Voice, Bedford, NY Support People Affected By Kidney Disease At Walk In Bedford Memorial Park BEDFORD HILLS, N.Y. -- The Hudson Valley Chapter of the PKD Foundation will come together and walk in support of those affected by polycystic kidney disease on Saturday, Sept. 20 at Bedford Hills Memorial Park. Registration for this year’s event is at 9 a.m., with the Walk beginning at 10 a.m. “Walk for PKD is a wonderful opportunity to truly engage the entire community offering a hands-on experience to help understand PKD,” said Darien DaCosta, chapter coordinator of the Hudson Valley Chapter of the PKD Foundation. "We are looking forward to welcoming families, friends and individual supporters to walk with and raise the funds necessary to find a cure for PKD.” Over the past decade, the chapter has raised in excess of $580,000 with more than 1,900 walkers participating. [Read more] From Newark Post, Newark, Delaware Delaware Walk for PKD Saturday, September 20th starting at 9:00 AM and ending at 1:00 PM EDT. We Need You To Walk in 2014 — Unite to Fight PKD Polycystic kidney disease (PKD) is one of the most common, life-threatening genetic diseases affecting thousands in America and millions worldwide. There is no treatment or cure. You can help bring a treatment within reach. The Walk for PKD is the PKD Foundation's largest annual fundraising event. Funds raised from Walks across the country make up nearly one third of our annual budget. The more money our walkers raise, the more we can do in the fight to end PKD! You can help by joining the Walk as a participant, volunteer or donor. Together, we can walk boldly toward a future where no one suffers the full effects of PKD From KSDK.com, St. Louis. MO Walk for PKD this weekend ST. LOUIS – PKD, or polycystic kidney disease, affects 1 in 500 people and is the fourth leading cause of kidney failure. This weekend, you can help those who suffer from it. Glen Kemper joined Newschannel 5 at noon to talk about how PKD affects the body. Watch the video player above to learn more. The Walk for PKD will be held Sunday, Sept. 14 at the Sons of Rest Pavilion inside Tower Grove Park. Walk registration begins at 9:30 a.m. and the walk begins at 11:15 a.m. If you would like to register for the walk, visit the Walk for PKD website.

Gratitude & PKD Awareness Day

From PKD Foundation

Dallas Community Leader to Host Gratitude Benefit Honorees

"The PKD Foundation and the people associated with it are an energetic group," says Ralph Hawkins. "I'm delighted to be connected with the folks working to find a cure for PKD."

Hawkins, a community leader in Dallas, and chairman of HKS Architects, will host a reception at his company on October 30 to honor those who will receive awards at the second annual Gratitude: A Celebratory Benefit for the PKD Foundation. He is also the incoming chairman of the Dallas Regional Chamber.

"I was invited to host a reception by the PKD Foundation," he explains. "I'm very interested in the advances being made in kidney disease research and the Foundation is taking a very active role, which I'm happy to support."

While he doesn't have PKD, Hawkins does live with a kidney transplant as a result of Alports Syndrome. This year marks his 20th year post-transplant.

But Hawkins emphasizes that transplants aren't the long-term answer. He feels strongly that research is the best solution to stop the disease for good.

"Genetic research is making huge inroads right now," he continues.

Hawkins is also appreciative of the role the PKD Foundation plays in raising awareness of PKD.

"Kidney disease is more prevalent than most people realize, but it's a silent disease," he shares. "I would like to see the nation more focused on treatments and a cure.

"The PKD Foundation is doing a great job of gaining attention for kidney disease and supporting the people who live with it."

A Reception to Meet the 2015 Gratitude Benefit Honorees
Thursday, October 30, 5 to 7 p.m.

PKD Awareness

From News Wire Canada, PKD Foundation of Canada

Today is National PKD Awareness Day

Speak to Canadians fighting a life-threatening kidney disease

TORONTO, Sept. 4, 2014 /CNW/ - While 46-year-old Cheri Barton looks like she is nine months pregnant, she isn't.

Cheri has autosomal dominant polycystic kidney disease (ADPKD), a life-threatening, genetic disease that causes multiple cysts to form on the kidneys, resulting in massive enlargement of the kidneys (up to three to four times their normal size) and can impact the function of surrounding organs, like the liver.1 ADPKD can also lead to deterioration of kidney function and in some cases, kidney failure.2

Weighing approximately 35 pounds combined, Cheri's enlarged kidneys and liver constantly push up against her abdomen and other organs, resulting in hernias, frequent pain and discomfort. Her kidneys are functioning well below average, and without treatment to help slow the progression of the disease, Cheri will likely end up on dialysis or in need of a transplant. Cheri is among the 35,000 to 66,000 Canadians who have ADPKD.3

"PKD Awareness Day, for me, is an opportunity to raise awareness about a condition few people know about," says Cheri. "This is a condition that not only affects the individual, but their family as well."

Cheri is available for interview and can speak to how ADPKD has impacted her life and what she is doing to help manage the condition.

Jeff Robertson, Executive Director, PKD Foundation of Canada is also available for interview and can speak to how ADPKD has impacted his own family and what his organization is doing to help make a difference.

For more information about ADPKD and to find out more about what the PKD Foundation of Canada has coming up, visit endpkd.ca. [Read more]

From KENS News, San Antonio, Texas

Walking To Cure PKD!

Thousands of Americans and people worldwide are living with Polycystic Kidney Disease but the good news is there is hope! Joining us to talk about PKD and how you can help find in finding a treatment and cure for it are Dr. Adam Bingman with Methodist Specialty and Transplant Hospital, Shonale Burke, and Patti O'Grady Ruffin.

SAN ANTONIO WALK FOR PKD

OP SCHNABEL PARK

GRAFF PAVILION

SEPT. 13, WALK - 8:30 A.M.

1.800.PKD.CURE

FOR MORE INFORMATION:

walkforpkd.org/sanantonio

pkdcure.org

Kidney Donations

From Clayton News Daily, Jonesboro, Georgia, By Heather Middleton

Jonesboro resident, Randy Daniel, is hoping for a life-saving kidney donation

Randy Daniel needs a kidney.

The lifelong Jonesboro resident has been fighting polycystic kidney disease his whole life.

He was diagnosed at 15 and now at 58, his kidneys do not function.

PKD is an inherited disorder that causes clusters of cysts to develop on the kidneys, according to the Mayo Clinic website. In Randy’s case, he did not inherit it. A gene mutation is the source of his disease.

“There’s no reason for him to have it,” said Randy’s wife, Pat Daniel. “He’s 1 percent of the total people who have it.”

As a result, he attends dialysis three times a week for several hours. The machine filters out toxins, waste and extra fluid in the blood — just like real kidneys.

But dialysis comes at a cost physically.

“Dialysis put a strain on the heart muscles and many people die from a heart attack,” Pat said.

To gain access to his body’s blood, Randy has a fistula on his upper right arm. A fistula is created when doctors join an artery and vein to make a large blood vessel.

Two 14-gauge needles, about .083 inches, are inserted into the vessel. One removes the toxic blood, pushing it through a filter, while the second sends the blood back into his system.

The treatments leave him feeling sick, most times nauseous, and tired.

I’m usually wiped out,” Randy said.

Dialysis also leaves him feeling thirsty. Because his kidneys do not function at all, Randy has to watch his fluid intake closely. He can only have 32 ounces per day.

“I crave water so badly,” Randy said. “Sometimes I’ll wake up in the middle of the night and my mouth is so dry.”

His diet is also limited. Pat said there are many restricted items including mundane foods like lettuce and cabbage.

“The body turns the food into liquid,” she said.

Fluid becomes his enemy. Twice this year, Randy has been hospitalized with pneumonia because too much liquid has accumulated in his lungs. Despite this, Randy said he is blessed to have the machine.

A new start

In 2003, Randy had a chance at a new start to life. He received a kidney from his cousin.

“I’ll never forget how good I felt,” he said. “I can’t describe the feeling.”

He said everything was brand new and he felt so good that he was up walking around just hours after surgery.

“I was so thankful for the kidney,” he said. “I still hit my knees every day for it.”

Following the donation, he was taking immuno-suppressant drugs so his body would not reject the new organ. Six months later, he was infected with West Nile virus which damaged the kidney and ultimately led to its failure in 2007. Since then, Randy has depended on dialysis to keep him alive. [Read more]

From The Telegram, St. Johns, Newfoundland, Canada, by Steve Bartlett

‘It’s a disease that’s fatal at some point’

Organ donation is eventually the only option for people with polycystic kidney disease

Averell Childs figures he’ll die young.

He expects something called autosomal dominant polycystic kidney disease, or PKD, will take him.

Living with it is a burden, but he does what he has to.

“A lot of people plan their retirement and what they are going to do with their golden years. The realist in me knows that I don’t have that option. I’m probably going to die at a young age,” he says. “I know that’s going to be the long-term impact.”

Today is the first National PKD Awareness Day. Canadians are sharing their plight with a disease that starts with cysts on the kidneys.

“The cysts grow and burst and create scar tissue,” explains Childs. “Eventually scar tissue becomes the dominant part of the kidney and it renders the kidney less functional to the point where it becomes non-functional.”

The 49-year-old Conception Bay South resident discovered he had PKD in his late teens or early 20s after he started suffering gout.

His dad suggested it was part of the disease “they” have.

PKD is hereditary and it eventually claimed his father. It’s also taken his grandmother and other relatives. His 50-year-old cousin and friend was recently put on dialysis with it.

“For the most part, it’s a disease that’s fatal at some point,” says Childs, who’s originally from York Harbour, a west coast community where PKD is well-known.

But rather than give up, he’s doing what he can to manage the disease and live a regular life.

He eats healthily, watching portions as well as salt and protein intake.

“I’m the guy at the grocery store picking out the smallest steak,” Childs jokes.

Childs also hits the gym regularly. He’s among a fitness minority — he actually enjoys the treadmill.

“I’m a big believer in the fact that regular exercise is a good medicine for anything that ails you,” he says. “I’d like to think it’s helped me control my blood pressure, which is one of the things they try to get you to do to manage PKD.”

There’s no cure or treatment. A kidney transplant is the only possible option. [Read more]

Tallahassee Democrat, by Helen Schwarz

Helen Schwarz recovering from kidney, liver transplants

Editor’s note: Helen Schwarz, administrative manager for the Tallahassee Democrat newsroom, has polycystic kidney disease and had a kidney transplant, followed by additional surgeries, in late 2013 and early 2014. The disease affects about 600,000 people in the United States, according to the National Institutes of Health. This is an update on her ongoing journey to health.

A year ago, on Sept. 4, I wrote an article on polycystic kidney disease for PKD Awareness Day telling you about this silent killer and how I was fighting for my life. Today I am updating you on my story and my battle with PKD.

In July 2013, Tallahassee Democrat Executive Editor Bob Gabordi wrote a blog asking the community to help save my life by becoming a living donor. (Thanks, Bob, for being on my lifesaver team). A very kind and generous man quietly responded and gave me another chance at life.

Bob Mayo (Padre) donated one of his kidneys because he felt called by God to help me. I did not know Padre until I met him after I returned to Tallahassee after my kidney transplant. He is a very humble person who wanted no super-hero recognition, but he is a super hero in my mind for giving up one of his kidneys to me, a complete stranger.

On Nov. 1, 2013, at the University of Maryland Medical Center (UMMC), I underwent a double nephrectomy and kidney transplant. My polycystic kidneys were removed, each weighing about 7 pounds, about the size of two newborn babies. I lived in temporary housing in Baltimore near the University Medical Center for six weeks for follow-up care while adjusting to more than 14 daily medications to keep my body from going into rejection.

Finally, I was able to return home Dec. 15. I was grateful to be home and enjoyed the holidays with my family.

In February, I started to swell and wasn’t feeling well. I went to Baltimore for my three-month check-up. I was immediately admitted to the hospital on Feb. 9. My kidney was starting to fail, not because of rejection, but because of polycystic liver disease (PKL). The weight and size of my liver was crushing my donated kidney. On Feb. 14, I was told I was dying, and if I left the hospital I would be sent back to Tallahassee under hospice care. [Read more]