Creating Mini-Kidney Organoids; Sister's Gift; COTA Fundraising for Life; Getting Donor Time-off; Living Dreams

PKD Research

From Science Codex

Mini-kidney organoids re-create disease in lab dishes

Mini-kidney organoids have now been grown in a laboratory by using genome editing to re-create human kidney disease in petri dishes.

The achievement, believed to be the first of its kind, resulted from combining stem cell biology with leading-edge gene-editing techniques.

The journal Nature Communications reports the findings today, Oct. 23. The work paves the way for personalized drug discovery for kidney disease.

The mini-kidney organoids were grown from pluripotent stem cells. These are human cells that have turned back the clock to a time when they could develop into any type of organ in the body. When treated with a chemical cocktail, these stem cells matured into structures that resemble miniature kidneys.

These organoids contain tubules, filtering cells and blood vessel cells. They transport chemicals and respond to toxic injury in ways that are similar to kidney tubules in people.

"A major unanswered question was whether we could re-create human kidney disease in a lab petri dish using this technology," said Benjamin Freedman, who led the studies at Brigham and Women's Hospital in Boston. He is now an assistant professor of medicine in the Division of Nephrology at the University of Washington and a UW Medicine researcher.

"Answering this question," he said, "was important for understanding the potential of mini-kidneys for clinical kidney regeneration and drug discovery."

To re-create human disease, Freedman and his colleagues used the gene-editing technique called CRISPR. They engineered mini-kidneys with genetic changes linked to two common kidney diseases, polycystic kidney disease and glomerulonephritis.

The organoids developed characteristics of these diseases. Those with mutations in polycystic kidney disease genes formed balloon like, fluid filled sacks, called cysts, from kidney tubules. The organoids with mutations in podocalyxin, a gene linked to glomerulonephritis, lost connections between filtering cells.

"Mutation of a single gene results in changes kidney structures associated with human disease, thereby allowing better understand of the disease and serving as models to develop therapeutic agents to treat these diseases," explained Joseph Bonventre, senior author of the study. He is chief of the Renal Division at Brigham and Women's Hospital and a principal faculty member at Harvard Stem Cell Institute.

"These genetically engineered mini-kidneys," Freedman added, "have taught us that human disease boils down to simple components that can be re-created in a petri dish. This provides us with faster, better ways to perform 'clinical trials in a dish' to test drugs and therapies that might work in humans."

The researchers found that genetically matched kidney organoids without disease-linked mutations showed no signs of either disease.

"CRISPR can be used to correct gene mutations," explained Freedman. "Our findings suggest that gene correction using CRISPR may be a promising therapeutic strategy."

In the United States, costs for kidney disease are about 40 billion dollars per year. Kidney disease affects approximately 700 million people worldwide. Twelve million patients have polycystic kidney disease and two million gave complete kidney failure. Dialysis and kidney transplantation, the only options for patients in kidney failure, can cause harmful side effects and poor quality-of-life.

"As a result of this new technology," Freedman said, "we can now grow, on demand, new kidney tissue that is 100 percent immunocompatible with an individual's own body."

He added, "We have shown that these tissues can mimic both healthy and diseased kidneys, and that the organoids can survive in mice after being transplanted. The next question is whether the organoids can perform the functions of kidneys after transplantation."

source: University of Washington Health Sciences/UW Medicine

Gift of Life

From Grand Island Independent, Nebraska, By Lauren Sedam

Woman is living because of her sister's gift of a kidney

BURWELL — Korlyn Goff is the queen of casseroles.

Just ask her sister, Lisa Obermier.

It’s something Goff and Obermier said they learned from their mother, Dee Conner, when they were growing up in Burwell.  Whether it was helping harvest crops or showing up with food in someone’s time of need, the sisters saw how important it was to be there.

“I live by the philosophy that you have to be a neighbor to have a neighbor,” Goff said.

But last year, Goff took that giving spirit above and beyond.  Obermier had long been living with polycystic kidney disease, and she was in need of a donor. Goff stepped up, and almost a year later, the two are thriving. But to Goff, the gift wasn’t some heroic effort.

It was what she had to do for her sister.

“It was the right thing to do,” Goff said. “It was the only thing to do.”

Finding the match

Polycystic kidney disease is a disorder in which cysts form in the kidneys, causing complications, including kidney failure.  It is hereditary, and several members of Goff’s and Obermier’s family have the disease, which can also present itself in the liver. Some have had transplants as well, and other family members have donated to some of them.

About 25 years ago, Conner was diagnosed with the disease in her liver. At the time, Obermier was tested, but her liver was fine.  It wasn’t until about 10 years ago that Obermier, who now lives in York, discovered she had the disease in her kidneys.

“That’s when they said it leads to transplant or dialysis or death,” she said.

For a long time, Obermier was on the list for an “angel donor,” but a living donor was also an option.

It became more of a possibility for Goff, who still lives in Burwell and does not have the disease, when her sister was forced to go on dialysis.  She saw her struggling, and she knew then that she had to get tested.

“I thought the sooner I make this decision, the sooner we can get on with life,” she said.

Other family members, including their father, Delmer, had wanted to donate, but Goff said she knew she was the match.  Around Thanksgiving, she started the process. After ensuring she was current on a variety of exams and after having preliminary blood work done, Goff underwent more extensive testing at Mayo Clinic in Minnesota.

“They tested you from one end to the other in that two days,” she said.

At the end of it, Goff heard the news she’d always expected: She was a match.  Those at Mayo Clinic told her to go home and talk about it with her family, but Goff knew what she needed to do.

Even so, others weren’t so sure.

Goff’s husband, Dave, is an only child, she said, and it was hard for him to think about his wife and the mother of Dustin, 26, and Kaden and Kortney, 21, going through something so big.  For the Conners, it was hard to imagine both of their daughters in this situation. It was a scary time, Dee Conner said, but she knew Goff had her mind made up.

“She had told me that she thought it was something she needed to do to save her sister’s life,” Conner said.

Obermier, too, worried about putting her sister in danger.

"It was mixed feelings because it’s very humbling to have to accept that kind of gift from anyone,” she said. “And I’d rather be on the other end of it any day.”

Their biggest fears

The operation was set for Dec. 30.  Goff, who works at a salon, wanted to recover during her slower months, and the transplant teams were able to make it work.

Obermier went to Minnesota on Christmas Eve for testing, and Goff came the day after Christmas.

On the day, they were supposed to be the second operation, but they were bumped to third. Goff was finally taken in at about noon, and Obermier was left to wait until they were ready for her a few hours later.

The sisters both came through the procedure, but they soon had a brush with some of their biggest fears. [Read more]

From WHO-TV, West Des Moines, Iowa, BY MICHAEL DASILVA

Kidney Donor Runs into Obstacle for Time Off from Work

"It`s been a big gift," said Heather Watson-Vance, who received great news last week when she found out that her step-daughter Cori Vance was a match to be an organ donor. "I was born with polycystic kidney disease, which is a terminal genetic illness. There is no cure. Pretty much all we can do is a kidney transplant or dialysis," said Heather Watson-Vance.

So when she found out Cori was approved to be a living donor and give her a kidney, she was ecstatic; until she found out Cori's employer - Windsor Windows & Doors in West Des Moines - wasn't so thrilled.

Cori says she kept Windsor in the loop throughout the whole process, and told them that she was being tested to see if she was a match, but that when the company found out she was a match, she was met with opposition.

"The HR lady had said that they`ve been talking and we need to talk about the days off and if I would be coming back, and so she recommended that she would give me a week to come back," said Cori.

Cori says she was later told by Windsor that they would give her two weeks off tops, and that that was them being generous, and that there would be no restrictions. "I had informed them that, you know, I wasn`t gonna be able to come back without any restrictions, and what I do is the paperwork, that I would have a ten pound restriction, and then she asked me would you be able to stand? For 8-10 hours? and I said it`s all up to my doctor, like I don`t know right now and she said no, so she just told me that my last day would be October 30," said Cori. At her job, in addition to paperwork, Cori also moves metal. "I unload it and load it into a cradle," said Cori.

Channel 13 News went by Windsor Windows & Doors in West Des Moines to hear what they had to say about all of this, but we were told by the front desk that the Divisional Human Resources Manager - Pete Crivaro - had no comment. "And then I spoke with you guys and when you guys had showed up there, I don`t think he liked that very much. So, he told me that if I do speak with you guys to let him know so that he could prepare and that to let you guys know that he`ll grant me 4-6 weeks," said Cori.

But Cori and Heather say this story is bigger than just their situation. "And that`s not my point is for me to get the 4-6 weeks, because they weren't gonna give it to me anyways, until all of this happened. I just like, it`s not okay, and I don`t` want other people who like have thought about donating, I don`t want them to change their mind, not to do it because they're scared or companies aren`t giving them a chance neither," said Cori.

"We just really feel like with an organ donation that`s gonna impede other people from maybe wanting to donate an organ if they were treated this way at their job or they're not going to receive their job back after the donation, I mean you can`t put your own family in jeopardy, you know even to save a life," said Heather Watson-Vance. [Read more]

Fundraising

From Plainfield Patch, Plainfield IL, by Scott Viau

Fundraiser for Plainfield Boy in Need of Kidney Transplant

When five-year-old Drew Duszynski was born, he was diagnosed with a rare kidney disease and liver disorder: Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis.

On June 8, 2015 Drew had both of his oversized, diseased kidneys removed and after a month in the hospital he returned home. He receives nightly dialysis (10 hours) and, if all continues to go well, he will soon complete the transplant process and receive a new kidney.

Despite his condition and all the challenges, Drew is just a normal little boy – bright eyed, smart, sweet, playful, funny, inquisitive and full of life

With the total cost of a transplant often exceeding $500,000, transplant patient’s families are unable to shoulder the financial burden of such a procedure. While insurance will cover a great deal of the costs for Drew’s kidney transplant, the expected out-of-pocket costs are estimated to be in excess of $50,000.

In connection with the Children’s Organ Transplant Association, a fundraiser for Drew will be held from noon to 3 p.m. Saturday, Nov. 7 at Katie O’Connor’s Pint House and Eatery at 13717 US Route 30 in Plainfield.

The event will include raffle drawings and 50/50, kids activities, food and a cash bar. Tickets are available at the door. Families will pay $12 or $6 per person. RSVP by Nov. 3 and receive a discounted ticket price of $8 for families or $4 per person. To RSVP, contact Dave Duszynski at 773.251.8464 ordaveduz@ameritech.net or Sara Swenson at773.677.7360 or sararenae_1@yahoo.com.

COTA (Children’s Organ Transplant Association) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. The organization helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA does not charge for its services and does not take a percentage of funds raised.

Find our more about Drew and COTA at COTAforAndrewD.com.

Living with PKD

From Northampton Chronicle, United Kingdom

Northampton firm backs 11-year-old girl’s dream to play football while fighting serious kidney disease

A talented young footballer is playing out her dream thanks to a generous sponsorship from a Northampton company.

Bethan Edgell, 11, from Buckingham, continues to fight a serious kidney disease, Autosomal Recessive Polycystic Kidney Disease (ARPKD), however she has been recognised by the MK Dons. And to help her realise her footballing ambitions, pump specialist firm Process Systems International (PSI) has agreed to pay for her elite training.

The football crazy youngster plays for Moretonville Harriers as a Striker and is now training with the MK Dons Girls Skills Elite Centre U13 squad.

Her proud dad Chris, who is an engineering co-ordinator for PSI, said: “Bethan has to overcome so many health hurdles to play her various sports, that this opportunity is really important and rewarding for her. There is no cure for her condition and her kidneys will gradually deteriorate, so she is determined to make the most of every sporting opportunity given to her.

“To have the support of PSI to pay for her additional training is very touching indeed.”

As for Chelsea loving Bethan, it’s early days but so far she is enjoying her elite status. She said: “I am truly grateful to PSI for giving me this opportunity with the MK Dons. The various sports I play, in particular football, is a large part of my life and keeping fit is helping with my condition.”

Waiting; Urgent Message; Finds Donor on Facebook; New Medicare Dialysis Model; Home based Dialysis

Living with PKD

From The Press and Journal, Aberdeen, United Kingdom, by Davis Kerr

Man forced to wait four years for kidney transplant

An Orkney man has criticised the Scottish Government after being forced to wait for years for a new kidney.

Steve Sankey spent four years waiting for and organ transplant and had to endure three years of dialysis and regular flights to Aberdeen for check-ups.

But he believes he and others in his situation could be spared the wait if the government adopted an “opt out” system for organ donations.

At present people have to sign up to the organ donor register for their organs to be used in transplants.

The government said it was committed to increasing the number of donors but evidence was split on whether an opt-out system would work.

Mr Sankey had been living with adult polycystic kidney disease, which left him with only 5% of organ function and meant he had to undergo dialysis.

The 59-year-old wildlife guide finally received a new kidney on Tuesday, September 15 at Edinburgh Royal Infirmary.

He said “Naturally I’m delighted with my new kidney, which after a month is working well and thus far all appears to be fine.

“The medics are really pleased with progress, as are all my family and friends. I had great support from everyone, especially down in Edinburgh, where I used to work, and I’d like to pay tribute to the professionalism of the transplant team in Edinburgh and the renal team in Aberdeen.”

Mr Sankey recently travelled to the Scottish Parliament for the launch of a private member’s bill being led by Labour MSP Anne McTaggart to try to change the law on organ donation.

He said: “It’s hugely disappointing that the Scottish Government has chosen not to include this piece of legislation in their programme – it could help so many others in my predicament.

“Instead we’re having to rely on a private member’s bill to try and get the organ donation system into a ‘soft opt-out’ one like many other European countries, including Wales.

“If I had been a resident of Spain, for example, I would have probably had a transplant several years ago, as the supply of organs through the different system is much greater than in the UK.”

From People, BY TIARE DUNLAP

Washington Woman Finds Unique Way to Search for a Kidney Donor for Ailing Husband

Amy Malancioiu is driving around Duvall, Washington, in an SUV emblazoned with her personal cellphone number and a desperate plea.

"Urgent!" reads a messagein large letters on her family's car. "Please help!! Husband needs a kidney. 206-930-2517."

Amy's husband, 57-year-old Sorin Malancioiu, needs a kidney, and it could take as long as six years for him to receive one through the organ transplant waiting list as his type O blood is the most difficult to match, KOMO newsreports.

Sorin suffers from an inherited disorder called Polycystic Kidney Disease, his wife explained on GoFundMe. The disease caused cysts to grow on the father of two's kidneys until they became too compromised to function and were removed in 2014.

"Just seven years ago, Sorin led a very active lifestyle," Amy wrote. "Since the surgery this past June, he has been on dialysis 3 days a week for 4 hours a day. He is exhausted, listless and in pain after each session."

Faced with six more years of these painful treatments and uncertainty about the future, Amy decided to take matters into her own hands.

"I don't want to wait for [a kidney] to come to us," Amy told the news station. "I want to go out and get it."

Amy, one of the couple's daughters and a close family friend are driving around with the plea written on their car windows.

"It's amazing the response I'm getting," Amy said. "It's time to spread the word as fast as we can hoping that somebody would be willing to donate – to get him a kidney faster so he doesn't have to live like he does now."

The couple said they've received 20 serious offers from people who say they're willing to donate. Finding a match will still be extremely difficult as donors must have type O blood, be non-smokers, over 21 years old and in good health.

Still, they remain hopeful their unusual tactic will yield results.

"I believe this could lead to a donor, to the right person," Sorin said.

Until it does, Amy will continue the search.

"It's just incredible to have somebody like her," Sorin said. "I'm the luckiest man. I am so lucky to have such a wonderful marriage."

From Global News Canada, By Erika Tucker

Kidney ‘want ad’ on Facebook leads to donor match for Calgary woman

CALGARY – A Calgary woman who has suffered from polycystic kidney disease for 15 years posted her plea for a donor on Facebook in June, writing, “the only way I will get a kidney before I die is to find one on my own and social media will be the best way.”

She was right.

“I wrote it and I shared it to a friend, and that friend, Linda, shared it to everybody,” said Lynne Prodaniuk, who has been on the donor list since 2007 with three attempted matches, but no success.

She said she nearly died in 2000 as doctors weren’t initially sure what was wrong. At one point in her treatment, her kidney function fell to 12 per cent. She said she had a catheter put in her abdomen to start dialysis, but by 2014, the dialysis was no longer cleaning her blood well enough, and her toxicity levels increased. She said she had surgery and started hemodialysis in hospital, and has been going for eight-hour treatments since then.

Prodaniuk said when she joined the donor list, the wait was estimated between four and six years. When she got to six years, she was told the wait time had increased to eight years. She passed her seven-year anniversary July 26.

Then, another friend’s Facebook post turned things around for Prodaniuk.

“I posted on Facebook that I needed a handyman, a window company recommendation, and a kidney,” Erin Kelly told Global News.

“Mostly I was kidding about the kidney but I put it out there anyway because my Facebook friends are awesome and I was secretly hoping someone would at least inquire.”

Kelly’s friend, Shamus Neeson, replied right away. Neeson works for Canadian Blood Services and has donated blood many times, so he was curious about the living donor process.

“It was something that I felt that I should look into, if I could help save someone’s life…it just made sense,” said Neeson. “I put a call in to the living donor program, they sent me a package of very basic screening questions on my family history and what not and then we just started going from there.”

Neeson has now gone through all required kidney and cardiovascular testing and been given the go-ahead. The two new friends are waiting for the green light from Alberta’s living donor program, and from there will schedule surgery.

“I can’t believe that somebody would want to do that for a stranger,” Prodaniuk said of Neeson’s generosity, but he said it was “easy.”

“I was surprised at how easy this whole process has been,” he said. “I know that I’ve talked about how much medical testing you have to go through [but] it’s been so easy. I’m surprised more people don’t do it.”

“I always believe that we’re here to help each other.”

READ MORE: How Albertans can become living organ donors

Prodaniuk said she’s tired of “living in a prison” and can’t wait to get her life back.

“We’re going to Australia because I have a friend in Sydney and we are going to have Christmas on the beach with a barbecue.”

If you would like more information on how to become a living donor, you can contact one of Alberta’s transplant programs.

For living kidney donor services, call the Southern Alberta Transplant Program at 403-944-4635.

For information on living kidney, liver or lung donation, call the Northern Alberta Transplant Services Living Donor Program at 780-407-8698.

Dialysis News

From Senior Journal

Medicare launches new dialysis model to improve kidney care

More than 600,000 Americans have end-stage renal disease (ESRD), also known as kidney failure, and require life sustaining dialysis treatments several times per week. Medicare has a new plan. In 2012, ESRD beneficiaries comprised 1.1% of the Medicare population but accounted for an estimated 5.6% of total Medicare spending.

These individuals typically have many health problems, are at higher risk of hospital readmissions, and suffer from fragmented care.

The Centers for Medicare & Medicaid Services (CMS) has announced the participants for the Comprehensive ESRD Care (CEC) Model, a new accountable care organization (ACO) model made possible by the Affordable Care Act and conducted by the CMS Innovation Center.

CMS says it is part of the Department of Health and Human Services’ approach to building a health care delivery system that results in better care while using taxpayer dollars more wisely,

ACOs are groups of physicians and other health care providers who collectively take on responsibility for the quality and cost of care for a population of patients. The CEC Model is designed specifically for beneficiaries with ESRD and builds on experiences from other models and programs with ACOs, including the Pioneer ACO Model and the Medicare Shared Savings Program.

In the CEC Model, dialysis facilities, nephrologists, and other providers have joined together to form ESRD Seamless Care Organizations (ESCOs) to coordinate care for ESRD beneficiaries. ESCOs will be financially accountable for quality outcomes and Medicare Part A and B spending, including all spending for dialysis services, for their ESRD beneficiaries.

This model will encourage dialysis providers to think beyond their traditional roles in care delivery and support beneficiaries as they provide patient-centered care that will address beneficiaries’ health needs in and out of the dialysis facility.

“This new ACO model represents a paradigm shift in care for beneficiaries with end-stage renal disease; it promotes a patient-centered approach to their dialysis and non-dialysis care needs that will help accomplish our delivery system reform goals of better care, smarter spending, and healthier people,” said Patrick Conway, M.D., MSc, acting deputy administrator and chief medical officer, CMS.

The CEC Model includes separate financial arrangements for ESCOs with large and small dialysis organizations. ESCOs with participation by a dialysis facility or facilities owned by a large dialysis organization, which is an organization that owns 200 or more dialysis facilities, will be eligible to receive shared savings payments. They will also be liable for shared losses, and will have higher overall levels of risk compared with their smaller counterparts.

ESCOs with participation by a dialysis facility or facilities owned by a small dialysis organization, which is an organization that owns fewer than 200 dialysis facilities, will be eligible to receive shared savings payments, but will not be liable for shared losses.

The CEC Model is part of the Department’s efforts to create opportunities for providers to enter into alternative payment models and meet the Secretary’s goal, announced on January 26th, to have 30% of traditional Medicare payments paid through alternative payment models by the end of 2016 and 50% by the end of 2018.

From Med Device Online, by Jof Enriquez

FDA Clears Baxter's Web-Connected Peritoneal Dialysis System

Renal solutions company Baxter International, Inc. announced recently that the U.S. Food and Drug Administration (FDA) has granted 510(k) clearance for its AMIA automated peritoneal dialysis (APD) system with SHARESOURCE web-based remote connectivity. The AMIA device is used by patients to perform peritoneal dialysis exchanges at home, by themselves or with the help of a caregiver.

"PD is an important treatment option for many patients with kidney disease seeking home-based therapy," said Jaime Uribarri, M.D., Department of Nephrology, Mt. Sinai Hospital, NY, in the announcement. "We welcome new technology that allows patients to start and administer their physician-prescribed PD therapy at home."

Baxter collaborated with DEKA Research and Development Corporation (DEKA) in developing the AMIA APD system, which the company claims is the only device cleared in the U.S. that incorporates patient-centric features like voice guidance, a touchscreen control panel with animated graphics, and the SHARESOURCE two-way connectivity platform, which allows remote access by healthcare providers.

"Enabling patients to actively work with their healthcare providers to initiate and confidently manage their dialysis therapy is the ultimate goal in the development of AMIA with SHARESOURCE," said Bruce Culleton, M.D., VP, renal therapeutic area lead, Baxter, in the announcement. "Baxter's focus is to understand and support access to the best renal replacement options for all patients, and then bring technology like AMIA and SHARESOURCE to healthcare providers so they can help their patients achieve their best possible outcomes."

According to Baxter, it will launch the AMIA APD system with SHARESOURCE this year in the U.S., where some 600,000 individuals are living with end-stage renal disease (ESRD), which is treated with either hemodialysis, PD, or a kidney transplant.

Unlike hemodialysis, which draws out blood from the body to be cleansed by a dialyzer, peritoneal dialysis makes use of the abdominal lining — called the peritoneum — as a dialyzing membrane to cleanse the blood and clear excess fluid. Automated PD devices called cyclers utilize clamps to control the flow of fluids in and out of the abdomen. The machines are pre-programmed and the fluid exchanges are performed automatically while the patient sleeps.

Wing-walking for PKD; Donation Laws Need Changing; Adult Stem Cell Kidneys?

PKD Awareness

From GetBucks, United Kingdom

Wingwalking ex-head teacher raises nearly £2000 for charity

Barbara Smith recently raised nearly £2000 by wing walking, a present bought for her by the staff and pupils at her last school


Recently retired Barbara Smith, from Chalfont St Giles, took part in the challenge for a leading kidney disease research charity

A retired head teacher raised nearly £2,000 for a leading kidney disease research charity by taking part in a wing walking experience recently.

Babara Smith, Sylecroft Road, Chalfont St Giles, suffers from polycystic kidney disease (PKD), a genetic and hereditary disorder whereby abnormal cysts grow in the kidneys.

Staff and pupils at Selborne School, Ealing, London, got together and bought her the wing walking experience as a retirement gift, which was presented to her at her retirement party in July this year.

Mrs Smith, who was a head teacher at various schools for the past 20 years, and was teaching for the past 40, said of the flight, which she did in September: “It was scary and exhilirating.”

But added: “It was a really exciting thing to do.”

Mrs Smith highlighted the fact that there are only three and a half thousand people on the transplant list, and said that the majority of those were waiting for a new kidney, which is one of the reasons why she wanted to do this.

It was inspired, she said, after she gave a motivational assembly to some of the school children when she came up with the idea of doing another challenge, having done a number of fundraisers for the charity in the past.

“It was a motivational assembly and that was when I came up with the idea of doing another challenge,” she said.

And added: “They [the children] all think I’m totally mad, but why not? You have got to do something, haven’t you? Something you have got to enjoy. Material things, they come and go, but experiences like this are really special.”
The challenge, as mentioned in the Chalfont St Giles community email newsletter, was inspired by trips to air shows when she was younger. [Read more]

From Longview News-Journal, Longview, Texas, by Ellen Goodacre

90 turn out for kidney disease walk in Longview

About 90 participants walked the exterior loop around LeTourneau University on Saturday to help in the fight against a leading cause of kidney failure.

The walk was to raise funds and awareness for polycystic kidney disease, at the 9th Annual East Texas Walk for PKD hosted by the East Texas PKD Foundation.

"The things we really focus on are education, information from top research scientists to help the patients know the best things they can do for themselves," said Teresa Andrus, Volunteer Chapter Coordinator for the East Texas PKD Foundation. "We also really encourage people to come for support. All of us need encouragement; this is a tough disease — chronic pain and fatigue are involved for most of us."

Andrus was diagnosed with PKD at age 22 in 1968 and was part of a clinical, surgical research study, which she credits with saving her life.

Polycystic kidney disease is a genetically inherited disorder that causes clusters of cysts to develop on the kidneys, according to the Mayo Clinic website.

"My husband suffers from PKD, and he just received a transplant in June and his donor set up a booth here," 39-year-old Melissa Navarro of Tyler said. "There is not a cure, and there's a lot of people who suffer from PKD and they need donations and support from the community."

While there are treatments for PKD and lifestyle changes patients can make to manage the disease, there is no cure. PKD is the fourth leading cause of kidney failure, and about half of PKD patients develop kidney failure by age 50, according to the PKD Foundation website.

One Longview man with PKD, Roger Kulig, has had both kidneys removed and is on dialysis awaiting a transplant because of the severity of his cysts on his kidneys caused by the disease.

"People need to be aware that (PKD) could already be in their body, and there's no way to know unless you go to the doctor and designate to do a sonogram," Kulig said. "PKD is something you just don't happen to know (you have). Normally, people walking around don't know they have it until they have a pain that's unknown."

Kulig began showing symptoms of PKD at age 55 and had to have both kidneys removed after cysts on the organs had grown so large that he had trouble walking and eating.

East Texas PKD Foundation member Madalene Miller received a kidney transplant in 2008 at Memorial Hermann hospital in Houston.

"I want people to know that there is no cure and there is no real treatment, other than a transplant," Miller said. "If you have the disease in your family, there is hope and they can extend that hope by participating in some of the research studies that the foundation is sponsoring. That's why we do this walk, so we can raise more funds."

There are more than 40 clinical studies recruiting patients for PKD in the U.S., according to the PKD Foundation website, www.pkdcure.org.

From Ottumwa Post, Ottumwa, Iowa, by Pam Credille, Managing Editor

Local Family Hopes Kidney Walk will be a Step Towards Transplant

A National Kidney Foundation walk hits close to home for one local family. Approximately ten years ago, James Elementary School Principal Jay Green was diagnosed with Polycystic Kidney Disease.

“There is no cure for it, so they basically treat him for it to prolong the inevitable. The end stage is renal failure and he will need a transplant,” said Cindy Green, Jay’s wife.

On Saturday, October 10, the Southeast Iowa Kidney Walk will take place on the Indian Hills Community College campus. Registration will be open at the walk and there is no fee to enter. A free-will donation is accepted, but you do not have to donate to take part in the event.

The walk will begin at 10 a.m. outside of IHCC’s Advanced Technology Building. The walk is approximately one mile in length.

All proceeds, from the Southeast Iowa Kidney Walk, will go to the National Kidney Foundation to aid in research. None of the monies collected will go to the Greens.

“He is going to have to have a transplant soon, he is on the waiting list for a new kidney,” said Cindy Green.

Unfortunately, Cindy is not a match for Jay. However, there family is holding out hope and trusting in God that Jay will receive a compatible kidney donation.

If you would like to find out more information about becoming a kidney donor, click here.

Gift of Life

From Wales Online, United Kingdom

Mum backs changes to donation laws in Wales after her life is saved in rare, three-way organ exchange

Health worker Helen Williams is backing changes to the organ donor law in Wales after her husband gave up one of his kidneys so she could have a transplant.

A health worker whose husband gave up one of his kidneys so she could have a lifesaving transplant is backing changes to the organ donor law in Wales.

Mum Helen Williams was born with polycystic kidney disease, an inherited condition which would have resulted in kidney failure.

Her husband Craig, who works as a consultant anaesthetist at Princess of Wales Hospital in Bridgend, made the selfless decision to give her one of his kidneys to make sure that never happened.

But while they shared the same blood group, Helen’s very high antibody count meant there was a serious risk her body would reject the kidney.

So the couple took part in a rare, three-way exchange which meant Craig’s kidney was donated to a stranger and resuscitation officer Helen received another stranger’s healthy kidney in return.

Helen, who has an 11-year-old daughter called Eleri, has backed December’s introduction of a new law in Wales which means people will be regarded as having consented to organ donation after their death unless they have opted out.'Live life, love life and donate life'

Today, Assembly Members will consider exceptions where consent should still be expressed, such as body parts including the brain.

Living donors who lack the mental capacity to express a view could also be deemed to consent to donation by experts acting in their best interests.

Speaking of the changes, which come into effect on December 1, Helen said: “It’s a personal choice, but I strongly believe if you are prepared to receive a donated organ to save your life you should be prepared to give when you are dead and no longer need it.

“My motto is: live life, love life and when you go donate life." [Read more]

PKD Research

From The Australian, by John Ross

Stem cell kidneys offer new hope for organ replacement

Australian scientists have ­created tiny kidneys in a dish in a key advance towards lab-grown ­replacement organs and crash test dummy tissues for gauging drug toxicity.

The achievement, reported in the journal Nature, represents a major step forward in stem cell technology.

The researchers made headlines two years ago when they grew disc-like kidney “organoids” in the lab. But the new version is bigger and more developed, comprising all dozen or so cell types found in the kidneys of a three-month-old human foetus. The earlier ­attempt comprised just two cell types.

The new organ was produced almost entirely from “pluripotent” stem cells, which are re-engineered from adult tissue such as skin. The 2013 version was grown from embryonic stem cells.

Team leader Melissa Little said the improved attempt still lacked the structure of a real kidney, with major blood vessels and exit plumbing for urine. “It’s not a kidney, it’s a kidney model,” said Professor Little, of the Murdoch Children’s ­Research Institute in Melbourne. “But it’s a hell of a lot better than we’ve had before.”

She said the approach could be used for drug screening in as little as two years, potentially saving drug developers hundreds of millions of dollars. The kidney is one of the ­organs typically poisoned by drugs, along with the liver and heart.

The kidney is one of the organs typically poisoned by drugs, along with the liver and heart, and problems often only show up during expensive phase two and three trials. Using lab-derived organs could circumvent this, exposing toxicity issues early on.

Other possible applications include using lab-grown kidneys to identify inherited genetic mutations, or to generate reconditioned cells for injection back into patients. A longer term goal would be to grow replacement kidneys with no danger of rejection by the immune system, because they were derived from patients’ own cells — a godsend for the tens of thousands of Australian kidney disease patients who need dialysis to survive.

Professor Little said this would be an “enormous undertaking” requiring buy-in from biotechnology companies. “Even if we knew how to do it — and there’s a huge amount of additional research we’d have to do — just to build a facility of sufficient quality control and safety (would cost) tens of millions of dollars. You don’t do that on research grants.

“(But) now we now have an opportunity to make the right cell types for the patient, and in large numbers.

From MedGadget

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PKD Webinar: Actos, a discussion of a potential therapy, Raising PKD Awareness, Solving Organ Shortage Sets New Research Goals

PKD Foundation

From PKD Foundation, Webinar Wednesdays

A discussion about (pioglitazone) Actos as a potential therapy for PKD

Register to attend:

Wednesday, Oct. 21, 12 - 1 p.m. CDT

PKD Foundation Chief Scientific Officer David Baron, Ph.D., will discuss the new study looking at (pioglitazone) Actos as a potential drug therapy for PKD. Guest speaker Bonnie Blazer-Yost, Ph.D., principal investigator for the study, will join the discussion.



PKD Awareness

From WOWT, Channel 6 NBC Affiliate, Omaha, Nebraska, By: Erin Murray

Four-Year-Old Girl Battles Kidney Disease

Jennifer Russell is not pretending with her daughter Emma, 4, as she puts a blood pressure cuff on her little arm.

"Alright, can you hold that in that arm for me and give me this arm?" said Russell.

This little check is a daily routine.

"Alright Emma is about a 110," said Russell with a look of slight disappointment on her face.

A blood pressure reading of 110 would be great for an adult, but for a four-year-old girl who weighs 40 pounds, the number is really high.

On the outside, Emma appears to be a normal girl. She likes Frozen, plays dress-up, climbs on things and loves to color.

"She is very much more outgoing than I am. She will tell every single person in line at the grocery store. 'Hi, I am Emma, I am four. I have kidney disease," said Russell.

To be more exact, Emma has polycystic kidney disease, better known as PKD. PKD is one of the most common and life threatening genetic diseases. People with PKD develop enlarging fluid-filled cysts in both their kidneys.

"And as those cysts overtake the kidney, they don't filter like they are supposed to," said Russell.

Currently there is no cure and there is no treatment. So most likely, one day Emma will go on dialysis and she will need a kidney transplant.

Already Emma's kidney's are much larger than they should be. An adults kidney's range between 11 to 14 centimeters and Emma's are 10.8 and 11.2 centimeters.

To bring awareness and to raise money for research, Russell is taking part in the Nebraska Walk for PKD on October 3rd. It will take place at Walnut Creek Recreation Area.



From WFTS ABC Affiliate, Tampa Bay, Florida, by Ashley Yore

Family hopes stranger's kidney will match for donation

We’re taking action for your health, raising awareness about polycystic kidney disease. It is the single most life-threatening genetic illness and one the Bragan family of Tampa is battling daily.

Living pain-free is a distant memory for Erika Bragan.

“Slowed me down, it has made me very tired, made it so that I can't do the things that I want to do,” Erika said.

She's up against polycystic kidney disease, the same disease that killed her mother.

You have these fluid filled cysts on the kidney that stop the kidney from functioning,” Erika’s husband, Scott Bragan, said.

That leaves toxins in the body. When Erika's symptoms started getting worse in 2008, her husband Scott decided to get involved. They've raised about $100,000 dollars for PKD and Scott's about to run his eighth marathon to gain awareness.

“Feeling that pain, in some way I feel like I'm sharing some of her pain,” Scott said.

Neither of them expected someone to share what Erika needs most, a kidney, until they met Jennifer Thomas, who's getting tested to be a donor.

“I just feel like I'm doing the right thing, it's not to me any exceptional act,” Thomas said.

She met a friend of the Bragans on a blind date and this complete stranger wanted to help.

“I think the more important question is, why is it so shocking that I would?” Thomas said.

Thomas is going through her final testing now and could be giving Erika a kidney in the next few weeks.

“I almost feel like the planet are aligned and that she's come down from the heavens and she's our angel,” Scott said.

“I think it's absolutely amazing,” Erika said.

Erika said she can't wait for normal life and feeling healthy with her family.

“I want to be there with them I want to enjoy a meal with them I just want to enjoy the day to day things without having to worry about if I'm going to get sick or not,” Erika said.

Doctors want Erika to start dialysis any day now, but Thomas’ kidney could come just in time.

The Bragans encourage everyone to get tested to see if they could become living donors. There are a number of ways you can support Team PKD.

Team Tampa PKD presents Drive for a Cure, a charity scramble golf tournament, at Eagles Golf Club in Odessa, FL, Friday October 2. For details call Kevin O’Brien 813-545-5450 or e-mail golf@t2pkd.org .

The Halloween Boo Bash benefiting PKD will be at the Italian Club of Ybor City on Friday October 16. For more details call 813-399-6420.

The Unite to Fight PKD was is Saturday October 17 at Fort De Soto Park, Shelter 14, 2500 Pinellas Bayway South Tierra Verde, FL. Check in is at 9:30 am. For more information contacttampawalk@pkdcure.org .

From Daily Observer, Pembroke, Ontario, Canada By Sean Chase

Pembroke Kidney Walk raises $18,000

The Pembroke Kidney Walk saw its largest level of support yet Saturday as a record number of donors turned out to shine the light on a silent disease.

It was a rather warm early fall day as more than 60 people gathered at the Pembroke Waterfront’s Riverwalk Amphitheatre to kick off this year’s fundraiser for the Kidney Foundation of Canada.

Once the monetary and online donations were counted, organizers announced they reached $18,000. Walks were held province-wide over the weekend with the goal of raising $850,000. The money will go to the the Kidney Foundation of Canada, an organization that supports kidney disease education, patient support programs, research and advocacy on the disease.

Hosting the event once more was the Sutherland family of Pembroke (Don, Cathy, Colleen, Meghan and Heather). The Sutherlands have been key proponents of the Kidney Foundation since Don was diagnosed with polycystic kidney disease and received a transplant after a live donation from his wife, Cathy, in 2008. Event co-ordinator Heather Sutherland remarked that the high number of participants shows how far reaching the disease has become in this area.

“It does affect a lot of people and more than the general public realizes,” she said. “The Sutherland Team is just happy to support the cause and bring the awareness locally. It's just great to see all these people come out and support it and come together as a community.”

One in 10 Canadians currently has kidney disease. The organization notes that 1,000 Ontarians are currently waiting for kidney transplants, while the number of Canadians being treated for kidney failure has tripled in the last 20 years. Bruce Hill, senior development manager with the Kidney Foundation, estimated there are 20 residents from Pembroke alone requiring constant dialysis, which is only offered regionally in Pembroke, Renfrew and Barry's Bay. He added there is a four to six year waiting list for transplants unless a donor is available.

“The sad reality is it's a silent disease,” said Hill. “You don't really don't know your kidneys fail until you are literally in the hospital with all sorts of symptoms. There is no cure and only two kinds of treatments – dialysis or transplant.”

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. Renfrew County has the highest incidence of polycystic kidney disease in the province. [Read more]

Kidney Issues

From Business Wire, Press Release

Solving Organ Shortage Announces Strategic Research Goals to Regenerate or Bioengineer a Kidney

AUSTIN, Texas--(BUSINESS WIRE)--Solving Organ Shortage today announced the Phase One Strategic Research Goals identified by its Whole Kidney Research Community, a multidisciplinary group of senior academic investigators collaborating to develop techniques and technologies to regenerate failing kidneys or engineer replacement organs for use in transplantation. By identifying which challenges to tackle first, SOS hopes to focus the field and accelerate progress toward solving the worldwide shortage of donor kidneys that is expected to worsen in the coming decade as the population in industrialized countries ages.


“U.S. taxpayers already pay over $40 billion dollars annually to treat end-stage renal disease and that number is steadily climbing.”

The research goals were the result of the 2015 Kidney Regeneration & Bioengineering State-of-the-Science Summit, organized by SOS and led by Dr. Thomas Carroll, associate professor of internal medicine and molecular biology at UT Southwestern Medical Center, and Dr. Leif Oxburgh, principal investigator in stem cell biology and regenerative medicine at the Maine Medical Center Research Institute. To gain a holistic perspective of the challenges, SOS convened transplant clinicians and senior academic investigators from multiple scientific disciplines, including developmental and stem cell biologists and tissue engineers. The two-day meeting enabled participants to share current research strategies and formulate a path forward.

Because the most common causes of chronic kidney disease are high blood pressure and obesity-linked diabetes, kidney disease is near epidemic. “It is a major health care burden affecting more than 26 million people in this country,” said Dr. Carroll. “U.S. taxpayers already pay over $40 billion dollars annually to treat end-stage renal disease and that number is steadily climbing.”

Over 85 percent of the more than 100,000 people currently on the waiting list for a donor kidney will not receive a transplant, according to Dr. Oxburgh. “For those who can’t get a kidney, only dialysis and supportive treatments are available. The average life expectancy for someone receiving dialysis is five years and quality of life is significantly impaired. Scientists are eager to provide a solution, but it will take close collaboration and dedicated funding.”

SOS, a global nonprofit, provides its organ-specific Research Communities organizational and administrative support to sustain forward momentum. Its main contribution, however, is raising monies to fund their identified strategic research initiatives. “Our goal is to award outcome-oriented grants to ensure consistent progress,” said Ronald Landes, president of SOS. “We focus our efforts on securing the financial contributions needed to support a science-driven effort to solve the organ shortage.”

About Solving Organ Shortage

Solving Organ Shortage is a nonprofit supporting a science-driven effort to regenerate or engineer replacement organs for human transplant by funding high-impact research projects. SOS Summits are designed to bring top academic investigators and clinicians together to form a virtual research institute focused on identifying strategic research goals that advance the organization’s mission to solve the organ shortage. For the latest SOS news and information please visit www.SolvingOrganShortage.org, or follow us on Twitter.



Contacts

Solving Organ Shortage
Catarina Wylie, 512-637-6762
cwylie@sosorgans.org
or
Cassie Pinkerton, 512-637-6762
cpinkerton@sosorgans.org

From Columbus Dispatch, Byline: New York Times, By Paula Span

Kidney disease: New guidelines mean more poor diagnoses

Is it really possible that half of the population older than 70 has chronic kidney disease?

International guidelines adopted in 2012 make it seem that way. They define the disease in terms of how efficiently kidneys filter the waste from blood, a measure called the “glomerular filtration rate” or GFR.

Healthy young people commonly have GFRs of about 120. A GFR lower than 60, or another marker of kidney damage, such as protein in the urine, for more than three months means chronic kidney disease.

“When you’re told you have a disease, that’s a bad day,” said Dr. Ann O’Hare, a nephrologist at the University of Washington-Seattle who specializes in treating older adults.

Chronic kidney disease causes no symptoms until its later stages, and most seniors with the diagnosis are told they’re at Stage 3, of five. But kidney function declines with age in almost everyone, and the proportion of older people with GFR readings below 60 approaches 50 percent, studies have found.

Yet the proportion of older people who will ever reach kidney failure, and thus need dialysis or a transplant, remains low. The lifetime risk of kidney failure in the United States is 3.6 percent for whites and 8 percent for African-Americans, one widely cited study found.

A number of physicians and researchers are now arguing — most recently in JAMA — that the guidelines should be recalibrated by age.

By using the same standards for everyone, “we’re labeling and medicalizing and victimizing a substantial fraction of the elderly population,” said Dr. Richard Glassock, who is an author of theJAMAarticle and a nephrologist at the University of California-Los Angeles.

Glassock and others propose that in people older than 65, the diagnosis should require a GFR reading of less than 45.

In the same JAMA issue, though, another group of physician researchers warn against changing the guidelines.

“Having chronic kidney disease increases the risk of death from any cause, but particularly cardiovascular disease,” a co-author, Dr. Andrew Levey, chief of nephrology at Tufts Medical Center, said in an interview.

They argue that an older person with low GFR and protein in his urine (called proteinuria or albuminuria) can take steps to reduce the risk of kidney failure.

A diagnosis also can help patients avoid drugs that can harm kidneys, Levey said. Doctors can modify medication dosages and warn older patients away from drugs that can impair kidney function.

No special screening is required to learn one’s glomerular filtration rate. It’s part of the common basic metabolic panel.

One thing the kidney-disease combatants agree on is that a GFR of less than 60 should prompt a conversation to explain that kidneys age with the rest of us.

“I don’t think this is something to lose sleep over,” O’Hare tells patients with modestly lower but stable GFR, and no other indications of kidney damage. “That’s often a huge relief.”

Gift of Life

From Community News, Australia, by Sarah Waters

Kidney transplant patient remembers agonising wait

JOHN Bloor (63) remembers the agonising wait until he heard the news he had a new kidney.

"The person was at Charles Gairdner Hospital on life support – they were turning the machine off," he said.

“There were two of us there waiting for a kidney because he was giving a kidney to each of us."

"It was a horrible position to be in… just waiting there all sorts of thoughts go through your mind."

It has been three months since Mr Bloor received his kidney and he is extremely grateful to the donor who gave him a new lease on life.

Before his transplant, he had been undergoing home dialysis four days a week for two years due to kidney failure, which resulted from a genetic condition known as polycystic kidney disease (PKD).

Mr Bloor’s mother had the disease, which is characterised by the growth of cysts on the kidneys.

It was passed on to three of her four sons.

Mr Bloor’s second eldest brother Geoffrey, who was not affected by the disease, donated a kidney to brother Murray about 10 years ago.

His half-brother Kevin Rumble received a kidney from his wife Esther about five years ago, but Mr Bloor had to go on dialysis while he waited to get a kidney from a donor.

He was diagnosed with PKD about 20 years ago, but the disease led to complete kidney failure two years ago.

“As the kidneys go downhill you always feel that little bit more lethargic and sick – where you want to throw up in the morning,” he said.

“It (PKD) is a very slow process, but you can’t do a lot for it. Towards the end there if I had watched my diet a bit better my kidneys would have lasted longer – diet plays a big part.”

Mr Bloor was put on home dialysis, which meant he could hook himself up to a dialysis machine at home instead of having to travel to hospital four times a week to have his blood cleaned.

Each time he had dialysis it would take him an hour and 15 minutes to set the machine up and 15 minutes to get the needle into his arm via a fistula.

He then spent four-and-a-half hours sitting next to the machine while it replicated the role of the kidneys and filtered toxins out of the blood.

“It takes over your life. All you really want is to move away from needles,” he said.

It took Mr Bloor three months before he could go on the kidney transplant waiting list as there were a number of things to consider before a transplant can take place, including the age and health of the patient.

Nine months later, he received the much-anticipated news that a compatible kidney had been found for him.

Mr Bloor is on medication to ensure his body won’t reject the new organ, but he is now free from dialysis.

“I can go fishing in the morning and not have to worry about rushing back to go on the dialysis machine,” he said,

“I still have to be careful and watch my diet, but it does change your life so much.”