From Scientific American, By Fran Kritz
Seven-year-old Quinn Gerlach got a gift certificate from his grandpa a few years back—not for a toy, a book or a game. It was for a kidney.
Gerlach was born with a single kidney, instead of the usual two, and it doesn’t fully function. So, one day, he may need a transplant.
Quinn’s grandfather, retired Tulare County Superior Court judge Howard Broadman, 68, of Visalia, Calif., learned he has the right blood and tissue types to be a donor for Quinn. But Broadman feared he might die or be too sick to donate a kidney when it was needed.
The former judge tried to think creatively, as he had on the bench—where he was known for unconventional and sometimes highly controversial sentencing.
He came up with what might be called the delayed kidney swap: He gave his kidney three years ago to Kathy DeGrandis, a retired airport manager in her 50s, at Ronald Reagan UCLA Medical Center. In exchange, Quinn was given a voucher that gives him priority to receive a live donor kidney, provided a match can be found when a transplant is necessary.
The idea caught on. Now about 30 hospitals around the country participate in this voucher program, administered by the National Kidney Registry. At least 21 kidneys have been donated by people in the U.S. in exchange for vouchers, according to the registry.
“If Quinn had needed the kidney right away, I was going to donate my kidney,” said Broadman. “But once he didn’t need it right away, I thought, why not pay it forward and maybe karma would come about.”
STILL WAITING, BUT WORRYING LESS
More than 93,000 people await kidney transplants in the United States, and each year 4,500 people die before they can get one.
Most patients seeking a transplant join the long waiting list for kidneys from deceased donors. Some are able find a living person willing to donate a kidney. Live donor kidneys are most desirable—the organs last up to 12 years longer—but are less available.
Another limiting factor for a successful transplant is that the donor kidney must be a good “match,” carrying a compatible complement of genetic markers with the patient in need.
To address that problem, doctors more than a dozen years ago devised a process known as donation “chains.” If a friend or relative wanted to donate to a patient but was not a good match, he could donate to another kidney patient in the same predicament, with a willing but incompatible donor.
Each transplant patient in the chain must have a donor who matches someone who currently needs a kidney in the U.S. and is willing to donate to that stranger. Hospitals and transplant centers have matched up to 35 pairs in such chains.
Broadman, the Visalia grandfather, took that idea further, proposing that donors be able to give their organs in advance—essentially to save a person today so that a relative might be saved down the road. {Read more]
Michele Jansen’s voice is her instrument.
For decades, the Minneapolis resident has used her well-modulated and expressive voice to support herself and her family.
As general manager at Minneapolis jazz and traffic radio station KBEM (88.5 FM), Jansen, 59, regularly hosts on-air shifts. She’s also been a freelance audio artist, voicing commercials and narrating scores of projects, from technical reports for 3M to the audio tour at the American Swedish Institute in Minneapolis.
Now she’s raising her voice in an effort to save her life and help others like her.
“I have the most common life-threatening genetic disease that no one knows about,” she said.
Jansen lives with polycystic kidney disease (PKD), which causes cysts to grow in the kidneys and leads to kidney failure. For the past three years, she has been on dialysis and is at the top of the list for a kidney transplant.
“A kidney should be the size of a fist,” she said. “Mine are like footballs.”
On Sept. 16, Jansen will host the Twin Cities Walk for PKD at the Normandale Bandshell in Bloomington. The annual event raises funds for research and advocacy for those with the disease.
“The first year I attended the walk, I was feeling fine and, honestly, I didn’t want to be around other people with this chronic illness who are at a more advanced stage,” she said. “You see your future and it isn’t pretty.”
Since then, she has volunteered to organize the event and be its voice. “We need research to find more ways to treat PKD or find a cure,” she said.
Being part of the walk has been helpful for Jansen, who said she “called in a few favors” for this year’s event. “It’s a fun day, and we can promise some fantastic live jazz from local musicians.”
Even before Jansen was diagnosed with PKD at age 24, the disease had shaped her. Her mother died of complications of PKD when she was 46 and Jansen was just 6.
“In one of the few pictures I have of us together, we’re both sleeping. My memories of my mother are fuzzy, but I remember her always being tired,” Jansen recalled.
Parents with PKD have a 50 percent chance of passing on the disease. One of Jansen’s four siblings also has it; her middle brother had a kidney transplant, and both of his children have PKD.
“We say we lost the lottery,” she said. “It’s a weird disease with a range of symptoms and prognoses. My brother’s kidneys stopped functioning in his mid-40s; mine were OK until my mid-50s.” [Read more]
Delaware Walk for PKD: Saturday, 10 a.m. at Glasgow Park, 2275 Pulaski Highway. Two walks - a 1-mile course and a 2-mile course - will raise money for polycystic kidney disease research. Register at walkforpkd.org/delaware.
For decades, the Minneapolis resident has used her well-modulated and expressive voice to support herself and her family.
As general manager at Minneapolis jazz and traffic radio station KBEM (88.5 FM), Jansen, 59, regularly hosts on-air shifts. She’s also been a freelance audio artist, voicing commercials and narrating scores of projects, from technical reports for 3M to the audio tour at the American Swedish Institute in Minneapolis.
Now she’s raising her voice in an effort to save her life and help others like her.
“I have the most common life-threatening genetic disease that no one knows about,” she said.
Jansen lives with polycystic kidney disease (PKD), which causes cysts to grow in the kidneys and leads to kidney failure. For the past three years, she has been on dialysis and is at the top of the list for a kidney transplant.
“A kidney should be the size of a fist,” she said. “Mine are like footballs.”
On Sept. 16, Jansen will host the Twin Cities Walk for PKD at the Normandale Bandshell in Bloomington. The annual event raises funds for research and advocacy for those with the disease.
“The first year I attended the walk, I was feeling fine and, honestly, I didn’t want to be around other people with this chronic illness who are at a more advanced stage,” she said. “You see your future and it isn’t pretty.”
Since then, she has volunteered to organize the event and be its voice. “We need research to find more ways to treat PKD or find a cure,” she said.
Being part of the walk has been helpful for Jansen, who said she “called in a few favors” for this year’s event. “It’s a fun day, and we can promise some fantastic live jazz from local musicians.”
Even before Jansen was diagnosed with PKD at age 24, the disease had shaped her. Her mother died of complications of PKD when she was 46 and Jansen was just 6.
“In one of the few pictures I have of us together, we’re both sleeping. My memories of my mother are fuzzy, but I remember her always being tired,” Jansen recalled.
Parents with PKD have a 50 percent chance of passing on the disease. One of Jansen’s four siblings also has it; her middle brother had a kidney transplant, and both of his children have PKD.
“We say we lost the lottery,” she said. “It’s a weird disease with a range of symptoms and prognoses. My brother’s kidneys stopped functioning in his mid-40s; mine were OK until my mid-50s.” [Read more]
Walk for PKD
From Newark Post
Delaware Walk for PKD: Saturday, 10 a.m. at Glasgow Park, 2275 Pulaski Highway. Two walks - a 1-mile course and a 2-mile course - will raise money for polycystic kidney disease research. Register at walkforpkd.org/delaware.
From Owen Sound Sun Times, Canada, By Rob Gowan
Kidney Walk raises funds, awareness
Sean Stobbe isn't sure when he will find out when he will receive a kidney transplant, but he expects mixed emotions when that match is found.
"It is going to be a combination of fear and excitement to finally get it all over with, but it is pretty major surgery," Stobbe, 28, said Saturday at Harrison Park where he was taking part in the annual Kidney Walk. "I have had some complications with my dialysis so I had to get some day surgery done earlier this year to correct it and that was nerve-wracking enough."
When Stobbe, who has polycystic kidney disease, will receive that transplant there is no way of knowing, so he is waiting patiently.
"It is whenever a suitable match becomes available," said Stobbe. "The average wait is a year-and-a-half and I am only at five months right now, so I might be waiting another year to hit the average."
Stobbe said living with kidney disease is a hassle for him. He has to undergo dialysis four times a day and each time it lasts 30-45 minutes.
"It disrupts my work days and everything," said Stobbe, a supervisor at Owen Sound Ledgerock. "All these exchanges of dialysis fluid."
For Stobbe, being diagnosed with the disease didn't come as a surprise. The disease is genetic and his grandmother had it, as did his uncle and his father Tom.
"I actually went to see the doctor with some foot pain, thinking it was plantar fasciitis and my blood pressure was astronomically high and I was sent for bloodwork," said Stobbe. "I came back with a pretty conclusive kidney disease result."
Stobbe said he feels pretty good since he started dialysis compared to the way he felt before.
"I have noticeably more energy than I did at the end of the winter before I started dialysis," he said. "From what I have heard, dialysis feels like a cure, and then when you get a transplant it feels that much better again."
But Stobbe remains optimistic one day he will receive that transplant and live a healthy and almost normal life. All the members of his family who had the disease had successful transplants, including his father more than 15 years ago.
"You just have to deal with a lot of the medications and you have to visit clinics to make sure everything is working properly," said Stobbe. "Aside from that you live a pretty normal life with a transplant."
The Owen Sound walk was one of more than 100 being held across Canada to raise awareness and funds to support Kidney Foundation programs and kidney research.
One in 10 Canadians is living with kidney disease, which usually progresses silently, often destroying most of the kidney function before causing any symptoms. The kidney is the organ that filters waste products from the blood in order to make urine.
"Kidney disease doesn't have the same public profile as some other ailments, even though it effects one in 10 Canadians," said Stobbe, who is the local Kidney Walk ambassador. "It is quite common."
Stobbe was taking part in his second walk on Saturday since he had been diagnosed with polycystic kidney disease in late 2015 and he feels it is important for him to be a part of that.
"It is nice to see more people coming out, and it would be nice to see more people still and get more donations," said Stobbe. "We are working on it and it is becoming a bigger event. I would like to help make it even bigger."
PKD Research
From ENA
Request for a Demo Report at: https://www.diligentmarket.com/request-sample-page.php?gturl=15409
Scope of this report: The report provides competitive pipeline landscape of Polycystic Kidney Disease. The report provides the marketed drugs information including its sales, development activities and details of patent expiry. The report provides the insight of current and future market for Polycystic Kidney Disease. The report provides pipeline products under drug profile section which includes product description, MOA, licensors & collaborators, development partner and chemical information. Coverage of the Polycystic Kidney Disease pipeline on the basis of target, MOA, route of administration, technology involved and molecule type. The report reviews key players involved in the therapeutics development for Polycystic Kidney Disease and also provide company profiling. The report also gives the information of dormant pipeline projects. Pipeline products coverage based on various stages of development ranging from preregistration till discovery and undisclosed stages and Provides pipeline assessment by monotherapy and combination therapy products, stage of development and molecule type. [Read more]
