Kids with PKD; PKD Conference, PhD Scholarship in PKD, Donor License Plates

Living with PKD

From Channel 13 ABC Affiliate, Houston, TX, By Steven Romo

TEXAS CHILDREN'S WELCOMES FIRST FULL-TIME THERAPY DOG

Texas Children's Hospital has a new four-legged employee helping make a big difference in day-to-day care for some of the smallest patients.

Elsa the golden retriever is specially trained to interact with children battling illnesses. TCH has had therapy dogs visit before, but Elsa is the first full-timer.

She lives with Sarah Herbek, her trainer.

"She's always very calm when she's working," Herbek said. "But when she's home and the vest comes off, she's any other dog -- chewing up shoes, or the bark off a tree."

At the hospital, with her green vest and picture ID badge on, it's back to business helping patients like Molly LeBlanc.

"Molly's been in and out of the hospital her whole life," her mother, Jill LeBlanc, said.

Molly is battling a genetic disorder called polycystic kidney disease or PKD. She had both kidneys removed just two weeks ago.

"We were having a lot of trouble getting her out of bed and Elsa helped us get her up to stand for the first time. She made a hard day a little easier," Jill said.

Elsa is funded by a donor family who wanted to give the patients a lasting gift. Herbek and Elsa have only been on the job for a couple weeks and already Elsa's celebrity status is taking off.

"It takes us a long time to get anywhere. People stop us every three feet," Herbek said.

Elsa makes the rounds visiting patients like Molly everyday. Molly is receiving in-patient care getting dialysis as she awaits a kidney transplant. Elsa brings a much-needed boost for a little lady taking on a big battle, Jill said.

"She sees Elsa or hears that she's coming and she's ready to go," Jill added.

From Vimeo.com, a video from Jordan Dashner

Harrison’s Story - PKD Foundation of Canada

From Springhill Home Page, Tennessee, By STEVE BAUM

OPINION: Franklin transplant patient endorses donor license plates

I am a lucky man to have lived to be 61 years old. Soon, I hope to have the license plate to prove it.

Recently, I went to www.DonateLifeTNPlate.org to order a “Donate Life” plate – not only because I am a strong supporter of the vital need to register donors for lifesaving organ transplants and want my car to be a moving billboard for the cause – but because I am a walking, talking testament to the need. The liver and kidney in my body are not my own.

At age 32, I was diagnosed with polycystic kidney disease – a genetic condition that took my father’s life in 1995 – as well as polycystic liver disease. I didn’t qualify for dialysis. By my early 50s, both my kidneys had decreased to 10 percent functionality. My liver was enlarged, severely affecting the organs around it. I was placed on the organ waiting list, and while my health declined gradually, I was in dire straits. I wasn’t the only one. According to national statistics, someone in the U.S. is added to the organ transplant waiting list every 10 minutes. I waited my turn for a transplant and prayed I wouldn’t run out of time.

Eleven months later, on Nov. 10, 2009, I received a call that a matching liver and kidney had become available to me from a young man who had been killed in a motorcycle accident. I don’t know if he chose to sign up on the registry or if his parents made the decision to donate his organs. I do know that because of that decision I am alive today. When doctors finally removed my diseased kidney and liver, the organs were massively oversized due to the extra weight of the cysts. The average kidney weighs a fraction of a pound. Mine weighed 9 lbs. The average liver weighs 3 lbs. Mine weighed 30 lbs.

After my transplant, I felt a weight lifted from me – literally and figuratively. I was given new organs and a new life and believe I have a responsibility to share with everyone I meet why registering as organ and tissue donors is so important. That’s why I travel across the state speaking about organ and tissue donation. That’s why I’m applying for a “Donate Life” license plate. And that’s why I need for you to apply as well. The more of us who are out there on the road reminding people to register as donors, the more people like me who will be given a second chance at life.

Here’s the rub: Tennessee policy requires that, in order for new plates to be produced, at least 1,000 people have to reserve them. The cost to reserve a plate is $35 in addition to your registration fee. That price pales in comparison to the lives that are in need of donors. Nearly 3,000 Tennesseans are waiting for organ donations. Tragically, 22 people across the country die each day waiting.

Surely we can all take the simple step of applying for a plate to help spread the word and bring these grim statistics down. Please go to www.DonateLifeTNPlate.org to claim your plate. And, if you’re not registered, please do so today at www.DonateLifeTN.org!

Donate Life Tennessee’s vision is that one day all Tennesseans will embrace organ and tissue donation as their personal responsibility. I firmly believe it’s a vision we can all work to realize if we’re driving in the same direction.

Learn About PKD

From Global News Canada, By Navneet Pall

Conference on polycystic kidney disease to be held in DDO


According to nephrologist Ahsan Alam, a doctor at the Royal Victoria Hospital, polycystic kidney disease (PKD) is the fourth most common cause of kidney failure.

It is a genetic disorder characterized by the growth of numerous cysts in the kidneys.

Autosomal dominant PKD is the most common inherited form, while autosomal recessive PKD is a rare.

People born with the disease develop cysts in the kidney, which then spreads to the liver.


“Life is constant urinary tract infections, kidney infections, cyst that rupture, [it’s] constant pain,” said PKD Foundation of Canada coordinator Luisa Miniaci-Di Leo.

“For me, sitting or lying down is the worst thing for me because [I] have these big masses … it’s hard, so I rely on pain killers three to four times a week.”

There is no existing cure for PKD.

PKD: and its Effect on Other Organs conference will be held Friday, Oct. 28 at the Dollard-des-Ormeaux Civic Centre Theatre.

From Seek.com, The University of Sydney, Australia

PhD Scholarship in Autosomal Dominant Polycystic Kidney Disease

The scholarship is supported by the Department of Renal Medicine, Westmead Hospital. Up to two full-time PhD positions are available to work on specific projects aimed at finding a better treatment for autosomal dominant polycystic kidney disease. The projects will provide an unique opportunity to be involved in a specific aspect of the full spectrum of translational research ranging from preclinical studies and drug development to applied clinical trial research in genetics, biomarker development, dietetics and other related areas (quality of life and process evaluation). The research will be conducted at the Westmead Institute for Medical Research and Westmead Hospital (and affiliated centres), and involve a multidisciplinary team.

The scholarship will be valued at the same rate as the Australian Postgraduate Award, and will be indexed annually. It may be renewed for up to three years, subject to satisfactory progress. For candidates that are successful in obtaining an APA, a top-up scholarship to the value of $10,000 per annum is possible.


Further information can be obtained from:

Associate Professor Gopala Rangan
Westmead Institute for Medical Research at Westmead Hospital
+61 2 8627 3502
g.rangan@sydney.edu.au


How to apply:

Applications should be emailed to scholarship.applications@sydney.edu.au and should include:
• a curriculum vitae
• a cover letter that includes a short (300 word max) research statement that explains their interest in the project and longterm career goals
• a copy of an academic transcript
• the names and contact details of at least two referees (preferably current)

Please subject the email: PhD Scholarships in Autosomal Dominant Polycystic Kidney Disease

Applications submitted through selecting the 'Apply Now' button below will not be accepted.


Closing date: 25 November 2016

3D Printed Kidney Parts, Gift of Life; Shawnee-on-Delaware PA; Prince George BC, Yard Signs: Need Kidney, PKD Awareness: Food for Thought

PKD Kidney Research

From MIT Technology Review, by Mike Orcutt

3-D-Printed Kidney Parts Just Got Closer to Reality

Using a 3-D "bioprinter," researchers were able to mimic the structure of an important kidney part.

Using 3-D printing, scientists have created tiny, intricate tubes that work like key components of real kidneys.

Many more steps are needed before they can make artificial kidney replacement parts, but the result is important because it means that for the first time researchers have used 3-D printing to make kidney tissue that functions like the real thing. The inventors say that in the near term the artificial tissue could be used outside the body to assist in people who have lost renal function, and for testing the toxicity of new drugs.

Researchers have been trying to create artificial kidneys for more than 20 years, but re-creating a kidney’s complex three-dimensional structure and cellular architecture, which are crucial to its function, is extremely challenging. Still, the need is urgent. Roughly 10 percent of the world’spopulation suffers from chronic kidney disease. To stay alive, millions depend on dialysis, a time-consuming and physically demanding procedure in which blood is removed, run through a filtering device, and returned to the body. But dialysis machines aren’t nearly as effective as kidneys. And while roughly 16,000 people receive kidney transplants each year in the U.S., another 100,000 are waiting for donations.

The new 3-D-printed kidney tissue is the work of the Jennifer Lewis labat Harvard, which has developed an innovative approach to “bioprinting” tissue. The technique allows researchers to print complex structures found in different types of human tissue, as well as vascular systems necessary to keep such tissue alive. The printing method uses multiple kinds of gel-like “inks.” After printing, the researchers remove one of the inks, leaving hollow tubes. Then they add cells, which mature into tissue.

Lab tests show that the engineered tissue demonstrates real kidney function to a degree that has not been achieved before, say the researchers. In particular, they were able to make the proximal tubule, a component of a nephron, the basic functional unit of the kidney. Nephrons filter the blood, keeping the useful stuff for the body and excreting the rest. If scientists could build a nephron, in theory they could build kidneys, but that will require developing several additional interconnected parts, which will probably take many more years.

Still, this particular part of the nephron plays a key role in the process of reabsorbing nutrients, so the printed tissue could be medically useful, says Lewis, a materials scientist and professor of biologically inspired engineering at Harvard. For one thing, such tissue could be used to test potential drugs; some 20 percent of drugs in late-stage human tests fail because they are toxic to the kidneys. The artificial tissue could also be used in a device outside the body to assist in kidney dialysis. Developing such a device will take a few years at least, she says.

Gift of Life

From Pocono Record, Shawnee-on-Delaware, PA, by Stacy M. Brown

Shawnee-on-Delaware business owner successfully donates kidney to husband

When the vows of matrimony are exchanged and the pledge of caring for each other in sickness and in health have been duly noted, many couples insist they’d always do whatever they could for their spouse.

Local business owner Fran Huber put that sentiment into action when she donated a kidney to her husband, Scott Huber, during a successful transplant on his birthday last month at Lehigh Valley Hospital.

“My husband has a family history of polycystic kidney disease so he was under his physician's care and last year was informed that he would have to seek out treatment where there were several options of dialysis,” Huber said. “My husband was not a proponent of having dialysis, it’s such a taxing procedure. So, we went through several classes of educating ourselves about dialysis.”

Scott Huber, 48, already had an idea what would happen if he opted for dialysis because his father had undergone dialysis years earlier.

The couple first realized that Fran Huber could provide a kidney match after she began a self-assessment that revealed very little health problems or concerns, factors that doctors immediately consider when examining a potential donor.

“There’s a lot of things that could kick you out of the door to being a donor and fortunately I’m very healthy and I’ve not been on any medication for anything and I’m very active,” said Fran Huber, who owns Mauka Nalu Pilates & Stand Up Paddleboarding, which specializes in outdoor lessons and fitness classes.

Without hesitation Huber decided she’d provide the kidney her husband needed to avoid not just dialysis but health problems that could lead to his death.

“I think we have such a wonderful support system of family, friends and those whom we work with,” Huber said.

“Before this procedure, I did a fundraiser of prayers where I asked everyone to pray for us and our surgical team at Lehigh Valley Hospital was so good and we trusted them so much that we were very confident,” she said.

Fran and Scott Huber were married 22 years ago. She was living in Hawaii while he lived in California working in the marine construction business.

“He was looking for paradise and I was looking for the big city,” Fran Huber said.

“Somehow, we stumbled upon each other. We moved to the East Coast for his work and we’ve been here for over 20 years, raising our family — we have two children — and buying our home,” she said.

Scott Huber has always been a generous and giving individual with a smile that radiates with energy, Fran Huber said.

“What he gives to people is so much positivity and people are just attracted to him,” she said.

“He’s heaven sent to me and everyone knows that.”

She said they’ve grown very close to many in the area and Huber also points out that she’s now lived in the Poconos for as long as she lived in Hawaii.

“My husband and I are best friends, we do a lot of things together and my children see that and sometimes they even complain that we’re always together,” Huber said.

So, it was to no one’s surprise when Fran Huber checked into the hospital to donate a kidney to her beloved Scott.

That the transplant occurred on Scott Huber’s birthday, Sept. 21, was something else that proved to be appropriate, his wife said. [Read more]

From Prince George Citizen, BC, Canada, by CHRISTINE HINZMANN

Man gives kidney to brother

It's no big deal.

That's what a local donor said about giving his left kidney away.

"You'd do it, too," said Ray Wakefield, 38, who, on Sept. 7, donated a kidney to his 40-year-old brother, Gary.

Ray will be the honouree of the Kidney Walk, hosted by the local branch of the Kidney Foundation of Canada, Sunday at the Charles Jago Northern Sport Centre starting with registration at 1 p.m.

The Wakefield family has a hereditary genetic disease in its midst called polycystic kidney disease.

Ray's dad Peter and Peter's brother William each have the disease along with Gary, who lives in Surrey.

Peter, who had a transplant a few years ago and William, who had a transplant about 20 years ago, are both thriving.

It took a bit of time for Ray to decide if he was doing the right thing.

"I've cut the chain," said Ray, who had to make sure he could not pass the disease along to his children or their children who might one day need his kidney for their survival. Brayden, 13, Kaylee, 11, and Emily, 8, are all safe from the disease.

As soon as he was assured the kids would not get the disease it was an easy decision to make.

Gary's kidneys were so damaged that they both needed to be taken out.

"When they were removed the kidneys weighed 52 pounds," said Ray, with a shake of his head.

"They took up so much room in his body that they had to dice them up and take them out. Gary's been on dialysis for probably five years."

Then he got really sick because dialysis was not working as it should.

"It was only a matter of time then," said Ray, who moved to Prince George about six months ago.

It took about a year of testing Ray's body to make sure he was healthy enough and the kidney was compatible enough to transplant into Gary's body.

"He's doing fantastic - he's already lost 50 pounds because now his kidney works," said Ray. But it took a while to get him there.

Ray's kidney was not a typical kidney and that complicated things. A typical kidney has one vein, one artery and one discharge going into the bladder. Ray's kidney had two veins, three arteries and one discharge. Ray said the doctors had to work on the kidney for about an hour before getting it into Gary and it took a couple of weeks before they knew it was going to work, he said.

Now Ray's remaining kidney and the kidney in Gary's body are working at the same capacity - about 50 per cent. Kidney function failure occurs at eight per cent so 50 is a strong number, he added.

Ray is six weeks into his healing and will have to take two months off work in total before he returns to his local job as a plumber and a full year for his body to completely recover. He is expected, at best, to reach 75 per cent kidney function and it will grow to accommodate its new solo status.

During this healing time Ray, who lost his mom to cancer a few years ago, said he is getting great support from girlfriend, Stacey, which has made the whole process so much easier.

"I'm doing good," he said. "The first few weeks were hard because you're trying to deal with it all and you're not used to laying in bed all the time. It's worth the two months off work to give Gary an extra 20 or 30 years on his life, you know? It's too soon for him to go. Some things you just gotta do."

Ray was warned that side effects from only having one kidney would include raised blood pressure and he needs to be careful of his potassium intake. But so far his blood pressure is the same as it always was and his attitude toward food is everything in moderation so the dietary restrictions don't bother him.

But no more snowboarding or extreme sports for Ray. He has to make sure to keep his remaining kidney healthy and safe.

Ray was able to access the living organ donor expense reimbursement program through the BC branch of the Kidney Foundation of Canada that covers costs related to donating a kidney including things like airfare, hotel, meals and loss of income. [Read more]

Living with PKD

From WCPO-TV Channel 9 Cincinnati, OH, by Ashley Zilka

Man makes yard signs to advertise for kidney transplant

Ralph Beach’s yard signs aren’t like the others cropping up around the Tri-State this fall. Instead of advocating for a political cause or candidate, they ask for something much smaller: A kidney.

There are more than 100,000 people waiting for kidney transplants in the United States, according to the National Kidney Foundation, and 66-year-old Beach is one of them. He spends 10 hours each day on dialysis to treat his polycystic kidney disease.

"It’s just hard to have a normal life," Beach, a retired banker, said.

He’s been waiting for a transplant for more than three years, and in that time, he said he’s been forced to miss out on hallmarks of retirement such as travel and time with family. Dialysis consumes huge portions of each day.

As time passed and Beach’s likelihood of receiving a donated kidney appeared to remain low, he decided to take the issue into his own hands. His yard signs and web site are a direct solution to his problem: instead of relying on waiting lists and a small pool of available living donors, they ask passersby directly to get in touch about a potential donation.

Beach said his 125 signs had generated about 65 calls from potential donors. Despite that, and despite being on the waiting list at five transplant centers in four different states, he still has not found a match.

All he and his family can do is wait.

"He just deserves a better life," said Velina Beach, his wife of 35 years. "He’s a very good man."

To learn more about kidney donation and how you can help Ralph Beach, click here.

From The Chronicle Herald, Halifax, Canada, by CAROL DOBSON

Food for thought: Farm-to-Table Dinner aims to raise awareness of kidney disease

Brittany Parker and her family know the challenges of living with polycystic kidney disease. Parker is one of the organizers behind the Kidney Foundation of Canada’s Farm-to-Table Dinner taking place at the NSCC Kingstec campus in Kentville on Thursday, Oct. 27. Front row (from left): Bethany Uhlman, Dale Uhlman, Booker (the dog), DJ Uhlman and David Uhlman. Back row (from left): Stephanie Uhlman, Carol Uhlman, Courtney Walsh and Brittany Parker. Carol and David Uhlman are the only two who do not have polycystic kidney disease. (Contributed)

Brittany Parker knows firsthand the challenges of living with polycystic kidney disease.

In her case, polycystic kidney disease is a genetic disorder that causes multiple cysts to form in the kidneys.

Polycystic kidneys become very large, have a bumpy surface and contain many fluid-filled cysts.

This can be associated with a number of conditions, including high blood pressure, urinary and kidney infections, kidney stones and kidney failure. Her grandfather, father, her four siblings and her daughter, Elli, have all suffered from this disease.

That’s why she’s one of the organizers behind a special Farm-to-Table Dinner to raise funds and awareness of kidney disease. The event is presented by the Kidney Foundation of Canada and takes place on Thursday, Oct. 27, at the NSCC Kingstec campus.

“It’s going to be a three-course meal paired with wines from Benjamin Bridge, which is the wine sponsor for the event,” Parker says.

“K-Rock has just come on as a sponsor so they will be providing a master of ceremonies for the evening. Ryan Cook will be the featured entertainment.”

Tasting stations will open at 5:30 p.m. featuring Lightfoot & Wolfville, Barrelling Tide Distillery, Bulwark Cider and Lazy Bear Brewing, followed by the dinner at 6:15 p.m.

There will be a silent and a live auction during the evening as part of the fundraising activities.

“It’s going to be a really wonderful event,” Parker says. “Not only are we raising awareness about kidney disease, but we’re doing it in a way that is enjoyable.”

According to statistics from the Kidney Foundation of Canada, as many as two million Canadians are affected by kidney disease.

There are a number of factors that contribute to chronic kidney disease, including ethnic origin, smoking, high blood pressure, genetics and a number of other factors.

In many people, it’s something that remains hidden, yet a simple blood test to indicate a person’s glomerular filtration rate (eGFR) or kidney function level can tell the tale.

“I can honestly say it’s challenging being the child of someone who is ill,” Parker says. “But, being the parent who is ill and not being able to do the things you (or your children) want to because you are unwell is infinitely worse in comparison. It’s a hit to the ego. It is heart wrenching being in the hospital and not being able to go home knowing you have two little ones who need you and don’t really understand why you aren’t there. It’s hard not being able to always be the best you can be because you’re not feeling well.”

“For my husband, having a wife with PKD means constant uncertainty of my wellness, worrying that I’m not taking proper care of myself, picking up lots of slack, being there when I’m sick, staying by my side when I’m in the hospital, riding an emotional roller coaster and all the while knowing he will be my caretaker as my disease progressively worsens.”

For Elli, this means educating her about her disease, teaching her the things that are important — the things that I didn’t know. We want to ensure she understands why it’s so important that she listen to her body, shares how she’s feeling, knows the importance of a kidney-healthy diet.

We encourage her to talk about it, to ask as many questions as she can think of. Knowledge is power.

When she first found out, she asked how and why this was going to affect her. We are all different. What my experience has been could be completely different for her.

“Thanks to research, things are improving. Each generation sees marked improvement; lives are bettered, more successful. It’s why supporting the Kidney Foundation [of Canada] is so important to us as a family.”

Tickets are going fast for the Farm-to-Table Dinner. The cost is $75 per person or $600 per table and can be obtained by visiting www.kidney.ca/farmtotabledinner.

PKD Fundraising: Fort Worth, Combating PKD with IVF, Gift of Life: Endicott

PKD Fundraising

From Star-Telegram, Fort Worth, Texas, BY FAYE REEDER

THE GREAT PUMPKIN PARTY WALK FOR PKD OCT. 22

It’s time for the 14th annual Walk for PKD, the signature fundraising and public awareness event for the PKD Foundation. The North Texas Walk is Oct. 22 in Southlake Town Square, where scores of walkers, patients, friends and family will be among the 50 cities nationwide participating in similar events.

“We're calling our event The Great Pumpkin Party for PKD. Halloween costumes are encouraged, and we will have costume contests for adults, kids and dogs,” said Sally Wilson, coordinator for the PKD Foundation North Texas chapter.

Polycystic kidney disease is “one of the most common but least well-known kidney diseases. PKD causes cysts to grow in the kidneys, eventually leading to kidney failure. Transplantation or dialysis are the only treatments. A recessive form of PKD also affects newborns, many of whom die during their first year of life. Our goal is to find an effective drug to treat PKD early in the disease process,” Wilson said.

Whitley Terry, 1, of Shreveport has the disease and is believed to be the only child from her area to have survived longer than one year. Whitley’s family and friends have formed a walk team — Whitley’s Warriors — and will be special guests at the walk as they raise money for research to find a treatment or cure for this terrible disease.

Registration opens at 7 a.m. with the 5K starting at 8 a.m., the Penny Kids Dash at 9 a.m. and the walk starting at 9:30 a.m. Learn how to help and participate at walkforpkd.org.

Living with PKD

From KSAT, Channel 12 ABC Affiliate, San Antonio, Texas

New form of IVF helps parents select healthy embryos

PGD allows doctors to know which embryo might carry genetic diseases

In vitro fertilization is no longer just for parents who have a hard time conceiving; it is now being used by parents who have a high likelihood of passing on a potentially debilitating genetic disease to their child. It’s a process called preimplantation genetic diagnosis. Doctors are testing for genetic diseases well before conception and giving parents peace of mind.

Twenty-two weeks into Jennifer St. Aubin’s pregnancy, she and her husband Peter received some very tough news. Their baby was diagnosed with polycystic kidney disease, or PKD.

“Nobody knew how serious it was going to be until she was actually born,” Jennifer told Ivanhoe.

Their daughter, Sophie, was born prematurely 15 weeks later. Due to PKD, her lungs had never fully developed. She died twelve hours after delivery.

“We were mourning Sophie, but we were also mourning the potential of never having a family,” detailed Jennifer.

That’s because Jennifer and Peter soon learned they were both carriers of the PKD gene. Even though they didn’t have the disease, they had a 25 percent likelihood of having another child with PKD.

Jennifer said, “If the IVF and the genetic testing weren’t in existence, I don’t think Pete and I would have chosen to have future children because of the risk of them being sick.”

The couple turned to Northwestern Medicine’s OBGYN Eve Feinberg, M.D., an expert in pre-implantation genetic diagnosis, or PGD.

“We then get a read out from the genetic testing laboratory that literally says embryo one unaffected, embryo two carrier, embryo three unaffected,” Dr. Feinberg told Ivanhoe.

The St. Aubins opted for in vitro fertilization and had 20 embryos tested. Nine of them had PKD. Dr. Feinberg implanted one of the healthy embryos and …

“We are pregnant 26 weeks now with a girl,” said Jennifer.

A baby girl that doctors fully expect will be healthy.

Jennifer is due in October. A single attempt of in vitro fertilization using PGD can cost between $18,000-$20,000.

Read more here: http://www.star-telegram.com/living/liv-columns-blogs/social-eyes/article107023872.html#storylink=cpy

Gift of Life

From WBNG Channel 12, Endicott, NY, By Nick Papantonis

Southern Tier mom donates kidney to son

Patients waiting for organ donations can wait years for a transplant. Thanks to one special donor, a Southern Tier man won't be one of them.

Patrick Saunders was diagnosed with Polycystic Kidney Disease before he was even born. The disease causes cysts to form in the kidneys and is usually hereditary. Saunders' first kidney was removed at the age of two. His second has been failing since the 7th grade. It currently functions at 22 percent, just two percent higher than required for a transplant. Enter mom.

"I feel like it's a blessing to be the one who, you know, donates a kidney, especially as a mother," said Deborah Saunders. "You gave your son life and to be able to do it again, it's truly a blessing and I think any mother given the chance would do it."

The knowledge his mother would be giving him a new lease on life elated Patrick.

"I can't be more happy that my mom's going to give me a kidney. She stepped up without getting asked to," he said.

Patrick explained that many of his friends volunteered to donate as well and they might not be off the hook. Transplanted kidneys only last 30 to 35 years at most, meaning he will likely need another.

In preparation for the procedure, the Saunders' family has been raising money to help cover the costs of the time off for both parents, as well as hotel bills and medications. Insurance will take care of the transplant itself.

They're not alone. Upon hearing their story, the owners of Food Fusion Bar & Grill (formerly Russell's Steakhouse) in Endicott donated space to hold a fundraiser on Sunday.

"It's for a good cause," explained co-owner Elena Honovich. "We really need more good people around here."

The fundraiser will take place from 1:00 to 6:00 p.m. Sunday afternoon at the restaurant, featuring food, a cash bar, and music. It's open to the public.

While the transplant date hasn't been set yet, Deborah is already looking forward to a healthier future.

"It will be a blessing to watch him every day," Deborah said.

Living with PKD: Wales; Zionsville, IN, Gift of Life: Houston, PKD Awareness: Give PKD the Bump

PKD Awareness

From News-Medical

Leading kidney charities launch social media campaign to raise awareness of polycystic kidney disease

Leading kidney charities call for international fist-bumps to combat most common inherited kidney disease

Polycystic Kidney Disease (PKD) International has joined forces with six European kidney charities to launch a social media campaign called Give PKD the Bump. This campaign unites patients, families and the public through the gesture of a fist-bump – representing the size of a healthy kidney and the symbol of the campaign. Friends, family and work colleagues are challenged to film, share, nominate and donate via social media using #BumpPKD.

Give PKD the Bump aims to raise awareness of PKD, and to generate funds for vital research and support services for people living with PKD – a progressive, incurable and life threatening inherited disease, which affects an estimated 12.5 million people worldwide. All proceeds from the Give PKD the Bump campaign will go towards improving the lives of those living with PKD. For example, research into biomarkers to develop a simple urine test to predict when PKD kidneys might fail or funding a Bio-resource Bank to contain cell, tissue and fluid samples of ADPKD and ARPKD for medical research.

PKD International spokesperson, Tess Harris said:

PKD is a devastating inherited disease, often described as a ticking time bomb, which has a profound and under-recognised impact on the lives of affected adults, children and families. I’m so proud to support the Give PKD the Bump challenge; something as simple as a fist bump signals not only solidarity but triumph too. With the help of the #BumpPKD, we hope to raise funds and awareness to create a world where everyone has healthy kidneys the size of their fist. The money we raise will help save lives. Together we can beat PKD.

PKD causes fluid filled sacs to develop throughout the kidneys, making them swell to up to four times their normal size (about the size of a rugby ball) and become up to 100 times heavier, causing patients a lifetime of pain, fatigue and kidney failure. Symptoms include high blood pressure, chronic stomach and back pain, kidney stones and blood in the urine. PKD may also affect the liver and some people are at increased risk of life-threatening brain aneurysms.

The most common type of PKD is autosomal dominant polycystic kidney disease (ADPKD) - caused by inheritance of a dominant PKD gene. Therefore, if someone has ADPKD, there’s a one in two chance of them passing it on to their children. ADPKD is the fourth cause of kidney failure worldwide with approximately half of people diagnosed requiring a kidney transplant or dialysis by the age of 54. The other type of PKD, autosomal recessive polycystic kidney disease (ARPKD), is expressed if a person inherits the ARPKD gene from both parents. The diagnosis of ARPKD can come as shock for parents since neither parent has experienced the symptoms of PKD before.

How can people support the campaign?

Through a social media challenge: Everyone and anyone can Give PKD the Bump, using just their smartphones and social media accounts. The aim of the challenge is simple: Grab a friend, film your fist bump, tag three other friends and pass it on using #BumpPKD

Donate: Once a #BumpPKD video has been created, text BUMP22 to 70070 or visit BumpPKD.com to donate online. Donations will be invaluable in achieving our goal, from funding vital medical research to developing diagnostic tools for patients and helping provide the support that PKD patients and their families need.

Wear a pin: Our exclusive ‘fist-shaped’ Give PKD the Bump pin can be purchased online for a small donation at BumpPKD.com. Wear it to show support for patients and commitment to funding research that will lead to a cure.

Go the extra mile: In addition to the social media challenge, people can support PKD patients by taking part in a nearby event, such as running for PKD or by holding a cake sale. More information and downloadable posters can be found at BumpPKD.com

Fist bump videos will be collected and celebrated online at: BumpPKD.com.

Living with PKD

From the Daily Mail, United Kingdom, By STEPHEN MATTHEWS

Father-of-two's kidneys swell to the size of RUGBY BALLS due to an incurable, genetic disease

Rob Thomas was dianosed with polycystic kidney disease six years ago

The illness causes cysts and makes kidneys grow up to 4 times than normal

He has 25 per cent function and may need dialysis if his condition worsens
To make matters worse, his two daughters Ruby and Abby both have it

A father-of-two has a life-threatening disease which causes his kidneys to swell to the size of rugby balls.

Rob Thomas, 44, from Pembroke Dock, Wales, was diagnosed with polycystic kidney disease - an illness which causes fluid-filled cysts to develop in the organs - six years ago.

It makes them swell up to four times their normal size and become up to 100 times heavier - causing pain, fatigue and eventually kidney failure.

Currently, he only has 25 per cent kidney function and may need dialysis within just two years if his condition worsens.

To make matters worse, it was discovered recently that his two young daughters Ruby, 10, and Abby, 6, have both inherited the condition.

His wife, Moira, has even offered one of her kidneys to him should he require a transplant.

From Current in Zionsville, Indiana, By Mark Ambrogi

Zionsville mom seeks kidney donor

From left, Pete, Mike and Sandy Rocco before Mike’s prom last spring. (Submitted photo)

Every time Sandy Rocco goes to her doctor, the Zionsville resident faces the same question.

“They ask, ‘Did you find a donor yet?’” she said.

Rocco, 52, has been on the kidney transplant list through IU Health since March. Her husband, Pete Rocco, is not a suitable match. Since her condition is hereditary, her immediate family members are not eligible.

“The kidney disease I have is an inherited disease (polycystic kidney), so it’s progressive,” Rocco said. “I’ve been fine up until October, and that’s when my kidney function started to fall, and that’s when they started doing testing and decided I needed to get a transplant.”

Rocco is trying to avoid having to undergo dialysis. She goes for blood tests every month.

“Every month my kidney function falls lower and lower,” Rocco said. “That’s why we’re hoping to find a living donor before I have to go on dialysis, because that will give me the best overall result and life expectancy. Once you go on dialysis, it’s three days a week and you are there six hours a day.”

That would make it hard for her to travel for work and to watch her son, Mike, a Zionsville Community High School senior, play baseball on the travel team. Mike is the couple’s only child together. Pete has three other children and Sandy has two others.

Rocco said there are more than 100,000 people nationwide on the kidney waiting list. At IU Health, the waiting list is 900. Rocco said the doctors say the wait is typically three to five years.

“Anyone can be a donor. It doesn’t have to be the same blood type that I am,” Rocco said. “There’s been a lot of advances with anti-rejection medicine.”

Rocco said her brother and sisters have the same disease, but they are not having any issues yet.

The family has started a Facebook page called “A Kidney for Sandy.” The first step for potential donors to take is to call IU Health at 317-944-4370 for an interview to determine eligibility. Pete said they have had some friends say they have called but were not eligible because of blood pressure, diabetes or something else.

“There are a lot of people that get ruled out immediately,” Pete said.

Pete has entered the paired donor program, where he might donate his kidney to another patient in exchange for the other patient finding a match for his wife.

Gift of Life

From The Telegraph, Houston & Peach Texas, BY WAYNE CRENSHAW

Kidney transplant co-workers doing well after surgery

A Hilltop Elementary School teacher and a co-worker who gave her a kidney are doing well after transplant surgery Thursday.

Wendy Wood, a special education paraprofessional at the Bonaire school, agreed to give a kidney to kindergarten teacher Shannon Grieshop even though they barely knew each other.

Wood’s husband, Jason, said Thursday afternoon that both were doing well after the surgery, although it did not go perfectly.

“There were some complications in getting the kidney to take in Ms. Shannon, but they got it figured out,” he said. “Everything is fine now.”

The surgery was performed at Emory University Hospital in Atlanta. Both women were in recovery, and he was expecting them to be moved to rooms soon.

Grieshop’s kidneys were failing as a result of polycystic kidney disease. After she put a letter in the mailbox of every staff member at the school letting them know of her plight, Wood responded that she was willing to donate a kidney. Tests showed that the two were a match.

As a show of support, students and staff on Thursday wore green, which is the color of kidney disease awareness.

Jason Wood said he “100 percent supported” his wife’s decision to donate the kidney.

“She just felt like God was putting it in her heart to do it,” he said. “We don’t second guess. We just go with it.”

Read more here: http://www.macon.com/news/local/article106482047.html#storylink=cpy

Read more here: http://www.macon.com/news/local/article106482047.html#storylink=cpy

Read more here: http://www.macon.com/news/local/community/houston-peach/article106251497.html#storylink=cpy

Gift of Life: Burton UK; Be a Donor: UK; PKD Fundraising; Walk for PKD: Hamilton, Ontario, Bluffton, SC; Pay it Forward: UK

Gift of Life

From Burton Mail, United Kingdom

Loving daughter gives kidney to save mum from dialysis

Janet Matthews, ​Stephen Matthews, Maisie Lowe and Jenny Lowe

A MUM has received the gift of life in the form of a vital organ from her daughter. Janet Matthews has suffered from polycystic kidney disease for several years.

The condition has worsened over time and doctors warned the 52-year-old that, without a donor, she would be on dialysis by the end of the year.

The JCB employee's husband, Stephen, and son, Andrew, were unable to donate as they are both diabetic. However, her daughter, 31-year-old Jenny Lowe, was found to be a match for kidney transplant surgery.

After a long discussion with her family, Mrs Lowe decided to donate.

Her generosity came despite the fact her own daughter, four-year-old Maisie, was born with just one kidney.

The pair underwent surgery in the summer and now Mrs Matthews is recovering so well she is planning to return to work as a group buyer at JCB Attachments, in Uttoxeter, this Autumn.

She said: "I was adamant that Jenny did not put herself forward as a donor. As far as I was concerned I was on the transplant list but realistically I was resigned to dialysis.

"I only found out Jenny was being tested to be a live donor when she got a call from the doctor while I was with her.

"When I found out what Jenny had done I felt anxious, because, whatever operation you undergo there is a chance of death and this could have robbed my granddaughter of her mum.

"I look back now and it makes me very emotional. Jenny is very special and what she did is absolutely fantastic."
Ms Lowe, a bank manager from Burslem, said: "This is something I had to do for my mum. The thought of her heading for dialysis and the ordeal she would have to go through spurred me on.

"When it came to the surgery I wasn't scared – just determined we were going to put things right. I've returned to work and am building my strength back up. It is amazing to see mum with lots more energy and able to do simple things that would've been too much a few months ago." [Read more}

From The Bristol Post, United Kingdom, By EmmaGrimshaw 

Bristol dad whose kidney has swollen to size of a rugby ball urges people to sign donor register

A dad who suffers from a life-threatening condition which causes the kidneys to grow to the size of rugby ball and become 100 times heavier is calling on residents to sign up to the organ donor register.

Ian Fereday, from Patchway, has witnessed first-hand the devastating impact PKD - Polycystic Kidney Disease - can have on lives.

His dad and two brothers also suffer from the incurable illness. But the most painful news for Ian was his two children being diagnosed with the degenerative condition, which affects 12.5 million patients around the globe.

The 56-year-old says he is lucky because despite being diagnosed with disease in the 1970s, he never felt unwell from it and was able to lead a normal life working for the military.

But then in January the father-of-two started vomiting and suffering from tiredness.

Doctors discovered only ten per cent of his kidney was functioning and he had to leave his job and start the deliberating treatment of dialysis. This meant visiting Southmead Hospital three times a walk to spend four hours strapped up to a machine. After the exhausting treatment, Ian could do nothing else but sleep for the rest of the day.

His dad and brother have already undergone transplants and now Ian's wife Ruth is having tests to uncover if she could donate her kidney to him.

He said: "What hit me the hardest was when my two grown up children, aged 30 and 31, found out that unfortunately their tests were positive. To think that they will have to suffer and go through all the things that we have is very hard to accept.

"I would love more people to join the donor register and help people with diseases like this."

Ian is also backing the Give PKD the Bump campaign which aims to raise awareness of condition and to generate funds for research and support services.

A spokeswoman for PKD International which is running the awareness campaign said: "PKD causes fluid filled sacs to develop throughout the kidneys, making them swell to up to four times their normal size,"

Find out more about the campaign, which is being launched on Friday, here.

PKD Fundraising

From Kings County News, Nova Scotia, Canada, by Ashley Thompson

Centreville woman raising awareness of kidney disease

Centreville resident Brittany Parker, pictured on the far right in the back row, is sharing her story in hopes of raising awareness of, and funds for, the Kidney Foundation of Canada. Brittany, her father and her siblings are all living with polycystic kidney disease.

The 29-year-old Centreville resident was diagnosed with a hereditary form of polycystic kidney disease at 15 years old. The disease runs in her family, with her grandfather, siblings and, more recently, nine-year-old daughter all receiving the same diagnosis.

“It's heartbreaking and I feel awful and I feel guilty about it,” the mother of two confides. “However, with the right diet and staying on top of things you can live a fairly normal life.”

The topic of kidney disease only comes up on an as needed basis in Parker’s household. Before her daughter’s diagnosis, Parker said she would have had a hard time finding the motivation to go public with her personal story.

Not anymore.

“I really want to ensure that the next generation has the ability to cope with it in a far better way,” she said.

Parker is chairing the organizing committee planning the inauguralFarm-to-Table Dinner fundraiser in support of the Kidney Foundation of Canada’s Atlantic Branch. The event, featuring a three-course meal and live performance by award-winning Nova Scotian singer Ryan Cook, is slated for Oct. 27.

“Growing up with kidney disease is one thing and you learn to deal with it and you roll with the punches, but when we found out that (my daughter) had polycystic kidney disease… it kind of changes your whole outlook,” said Parker.

More than anything, Parker hopes her story will inspire others to pay attention to the warning signs coming from their bodies. For Parker, something like the common cold can completely rock her world if the symptoms are ignored.

“A couple of years ago I got a kidney infection and didn’t know it and it actually collapsed my kidney,” she recalled. “I got deathly ill and went into outpatients thinking it was a kidney stone and the next thing I know I’m being rushed into the (operating room).”

She remembers how upsetting it was for her young children to see her in a hospital bed, and

that memory serves as a reminder of why she’s decided to fight for a better future for everyone living with kidney disease.

For those learning to cope with the illness, Parker recommends learning more about the symptoms, trusting instincts, eating a kidney-healthy diet and advocating for prompt medical attention whenever something does not feel right.

“It's not worth it to try to hold on and see how it plays out,” she said. “The sooner that you get screened and tested the better chances you have moving forward.”

If you go

The Farm-to-Table Dinner evening at NSCC Kingstec Oct. 27 will begin at 5:30 p.m.. There will be tasting stations for local wine, beer, cider and spirits as well as dinner, live music by acclaimed Nova Scotian songwriter Ryan Cook and auctions. To learn more about the event or how to purchase tickets, visitwww.kidney.ca/farmtotabledinner

Walk for PKD

From Hamilton Community News, Ontario, Canada

Hamilton Kidney Walk Sunday at Mountain Drive Park

Canada’s largest event dedicated to raising money for kidney research

One in 10 Canadians are battling kidney disease. Craig Kerr of Hamilton is one of them. His kidneys weigh 15 pounds each and are functioning at nine per cent.

Kerr lives with polycystic kidney disease (PKD), one of the most common life-threatening, genetic diseases that causes multiple cysts to form on the kidneys, resulting in massive enlargement of the kidneys and can impact the function of surrounding organs.

Those living with PKD have a 50 per cent chance of passing it along to their children. Kerr received it from his father, who was on dialysis for eight years before receiving a kidney transplant and passed away from cancer last year.

Three out of his four siblings are also living with PKD and his two children haven’t been tested yet.

On Sunday, the Kidney Foundation of Canada will be having its Hamilton Kidney Walk at Mountain Drive Park.

The Kidney Foundation’s annual walks are Canada’s largest event dedicated to raising money for kidney research and programs that help support those living with kidney disease.

Mountain Drive Park is located on Concession Street at Upper Gage Avenue. The Kidney Walk runs from 9 a.m. until noon. To register or for more information, contact Patrick Cook at 1-800-387-4474 ext.4969 or pcook@kidney.on.ca, or see kidney.ca.

From Bluffton Today, South Carolina, By NOELLE WIEHE

Superhero walk to be held to fight genetic disease

The Bredeson family of Bluffton is organizing their third annual walk to raise money for the Tuberous Sclerosis Alliance in honor of their 10-year-old daughter, Chloe Bredeson, who was diagnosed with TSC in 2010.

The LIDS Step Forward to Cure TSC is a national walkathon hosted in more than 30 cities across the country. Superhero Chloe, as she has been nicknamed for the way she marches into her doctors’ appointments wearing a pink and purple superhero cape, will be joined by walkers dressed as their favorite hero for the walk Oct. 1 at Jarvis Creek Park on Hilton Head. The walk is an effort to raise awareness, money and hope for people living with TSC.

Chloe is 10-years old and is a fifth grader at Michael C. Riley Elementary School. She was diagnosed at the age of 3 when she began having seizures. The disease causes noncancerous tumors to grow in the vital organs, particularly the heart, brain, skin, lungs, kidneys and eyes. TSC is the leading genetic cause of epilepsy and autism. Chloe’s mother Amy said about one million people suffer from the disease worldwide.

With each doctor’s visit, Amy asked questions to better understand her daughter’s diagnosis, and was eventually referred to a TSC specialist at Cincinnati Children’s Hospital in Ohio, where the family began traveling every six months for the first two years since her diagnosis for MRIs and treatments.

Some people are much more affected by TSC, Amy said; some will never walk or talk; some have hundreds of seizures a day; some have undergone countless brain, kidney or heart surgeries and others don’t even survive.

Because of TSC, Chloe has tumors in her brain, skin and one eye. She also has polycystic kidney disease and will eventually require a kidney transplant.

“But Chloe does not let any of that get her down,” Amy said. “She pushes through every challenge that comes her way; she fights back the tears as doctors, nurses and lab technicians poke and prod; she takes her medicine twice a day without arguing and if she wants to achieve something, she works at it until it happens.”

Amy now keeps in touch with other parents on Facebook and through different groups of people who have children living with TSC.

“It’s kind of my mission in life now,” Amy said. “People have been really generous and supportive; a lot of people come to the walk and it’s a great event.”

Through the walks, the Bredeson family has raised nearly $20,000 since Chloe’s diagnosis, Amy said. They began by going to the walks held in Columbia, S. C., and would raise about $1,000 for the organization, but then when so much interest arose in Hilton Head, Bluffton and the surrounding areas, they decided to bring the walk here and have raised nearly $9,000 each of the past two years. [Read more]

Pay it Forward

From The Leader, Wrexham, United Kingdom

Coedpoeth man wants to help hospital that helped him through serious illness

A YOUNG man who has undergone two kidney transplant operations is raising funds for the hospital that helped him and two relatives through serious illness.

Dylan Lewis, 22, of Coedpoeth, spent two years on dialysis at Wrexham Maelor Hospital before receiving a kidney transplant in 2014.

His cousin Colleen Matthews, 25, of Coedpoeth, who had a kidney transplant from her 23-year-old brother Stephen last year, received regular check ups at the hospital and his grandmother Sheila Roberts, 76, had breast cancer treatment at the Shooting Star unit in 2015.

Dylan has arranged an evening of entertainment at Brymbo Sports and Social Complex on Saturday to raise funds for both wards.

He said the event was his way of “saying thank you and giving a bit back” to the hospital which “looked after me very well”.

“They have helped my family an awful lot. They have been really supportive,” he added.

Dylan, who had polycystic kidney disease, received a kidney and liver transplant when he was just 12.

The kidney failed and he spent five years on dialysis at Alder Hey Hospital in Liverpool and another two at Wrexham Maelor Hospital before his transplant at Queen Elizabeth Hospital, Birmingham, in September, 2014.

In 2014 Dylan organised a similar event at the same venue, which raised £3,119 for Alder Hey.

The dialysis treatment, he said, was “really restricting and physically draining”, but added he felt “amazing” two years on from the transplant.

“You don’t realise how ill you were until after you are ‘normal’, I suppose,” he added.

Both Colleen and Mrs Roberts are doing well.

Dylan is studying a BTEC in live events and production at Coleg Cambria in Wrexham and hopes to go to university next year.

He thanked friend Vona Law, from Bryneglwys, for helping him to organise Saturday’s event.

Entertainment will include live performances from the Sidelights DJ duo Terry and Jude, as well as a raffle.

Admission to the event, which starts at 7.30pm, is £5 on the door.