Sunday, March 2, 2014

Learning to Take Action: Teacher and Students Raise £40,000 for PKD and Other Causes

PKD Fundraising

From Manchester Evening News, United Kingdom, by Ruhubia Akbor

Shaw action man and his pupils raise £40k for charity

St Joseph’s RC Primary’s Steve Hill has spent the past four years completing a series of challenges in aid of numerous good causes including Cancer Research UK, PKD Charity and CAFOD.

An action man deputy head and his generous pupils have raised a staggering £40,000 for charity.

St Joseph’s RC Primary’s Steve Hill has spent the past four years completing a series of challenges in aid of numerous good causes including Cancer Research UK , PKD Charity and CAFOD .

Youngsters have also raised thousands for Supporting Shane – a fund set up for Year 2 pupil Shane Keating who suffers from rare muscle wasting disease Duchenne Muscular Dystrophy.

The school, in Shaw , Oldham , aims to raise at least £10,000 a year - and has already smashed this year's target.

Mr Hill said: “I enjoy a challenge and I like an adventure and over the last few years my classes and I have used these personal challenges and the children’s enthusiasm to raise just over £40,000 for charity.

“As always, 'Mr Hill’s Challenges' as they have become known, really enthused the children and grabbed their imagination.

“They got right behind me from the start, and have been fully involved in the fundraising for these very worthy causes.”

Over the last 12 months Mr Hill has successfully completed a trek through the jungles of Borneo and has scaled Mount Kinabalu – the highest mountain in south east Asia. [Read more]



From Messenger Newspapers, Sale, United Kingdom

Sale slimmers to shed the pounds for charity

A GROUP of big-hearted slimmers from Brooklands, Sale, are doing a sponsored slim to raise money for two good causes - Stockdales and Polycystic Kidney Disease.

Members of the Brooklands Slimming World group, which is held every week at St John the Divine Church, Brooklands Road, are taking part in a national Slim for Good campaign.

Natalie James, fundraising manager, for Stockdales, based in Sale, says: “We’re thrilled that Slimming World members in Brooklands have chosen to support us. Their donations will help fund our new minibus which will be used for day service activities so adults can learn more skills to become more independent as well as day trips and holidays.”

Anyone wanting to take part in the six-week Slim for Good campaign can do so any time from Wednesday 26th February. Sponsorship forms are available from the Brooklands Slimming World group, which is held at St John the Divine Church every Wednesday at 5.30pm and 7.30pm.



From HinckleyTimes, United Kingdom, by Rachel Parrish


Rachel Hillyard hopes to raise hundreds of pounds for the unit at Leicester General Hospital which cared for her father.

An Earl Shilton mum who suffers from a life-threatening kidney disease is to have her head shaved for charity just weeks before she is due to be chief bridesmaid at her best friend’s wedding.

Rachel Hillyard, 39, from Astley Road, hopes to raise hundreds of pounds for the renal unit at Leicester General Hospital, which cared for her father, who also had the disease for more than 30 years.

Stu Hillyard died in September 2013 from kidney failure caused by polycystic kidney disease (PKD) at the age of 60.

Rachel has inherited the condition, which causes fluid-filled cysts to form inside and outside of both kidneys, and may face the same fate.

She is currently being treated for stage two symptoms but says that they could progress to the final stage five symptom - kidney failure - at any time.

The disease can spread to other organs and in Rachel’s case is already affecting her liver. [Read more]



From MySuburbanLife.com, Addison, IL

Addison sports bar to host fundraiser for kidney transplant

ADDISON – Pyramid Sports Bar in Addison will host a fundraiser for a Lake in the Hills, IL man who needs a kidney transplant.
Patrick Turchan has polycystic kidney disease, a hereditary illness, and his kidneys have started to fail during the past year. His grandmother, mother and brother all have died from complications related to polycystic kidney disease.... [Read more]



Gift of Life

From Irish Mirror, by Alana Fearon

Family of brave 16-year-old have thanked the mystery kidney donor who gave their son the gift of life

The family of a brave 16-year-old have thanked the mystery donor who gave their son the gift of life.

For Jack Howard’s family his kidney transplant was “much more than a dream come true” last summer.

Jack – who was born with rare Charge Syndrome leaving him blind in one eye, deaf in one ear and needing peg-fed – was given the heartbreaking news back in 2012 that he needed to start dialysis.

The bubbly teen from Cloonfad, Co Roscommon, had one of his kidneys removed in 2007 and was told he’d eventually need his other faulty kidney replaced.

When he started gruelling home dialysis five nights a week in September 2012, his devoted dad Robert offered to give his son one of his kidneys and was found to be a perfect match. But just as he was gearing up for the surgery the Howards got the call last July that a kidney was available and Jack got his life-changing op in Dublin’s Temple Street Children’s Hospital.

Mum Amanda revealed: “Jack was only on the transplant list for 10 months when he got his kidney and I wake up every day thinking how lucky we were and how surreal it all was.

“There are no words to describe how selfless the donor’s family were giving us this gift of life but I sent an anonymous letter to them through the donor co-ordinator before Christmas to thank them. Jack has been a miracle from the word go. [Read more]



From Portland Tribune, by Beverly Corbell

Kidney donation from niece saves aunt's life

Every year in America, 69,000 people die from kidney failure. Many of those lives could be saved if more people were willing to donate a kidney, says Peggy Parker, of Gresham a registered nurse who does home visits and community outreach for Care Oregon.

Parker knows what she’s talking about, not only from a professional perspective but from first-hand experience. In early December, Parker and her aunt, Amie Griggs, of Boring went into surgery together at Legacy Good Samaritan Transplant Center, where Parker donated one of her kidneys to Griggs.

It was a lifesaver for Griggs, 50, who had gotten sicker and sicker before the transplant to the point that she was vomiting everything she ate because her body was so ill from kidney failure. Her illness, polycystic kidney disease, is hereditary, and she got it from her father.

According to the website of the American Kidney Fund, more than 600,000 Americans have polycystic kidney disease, or PKD. The disease causes cysts to grow on the kidneys, damaging them, and over time leads to kidney failure.

Many people think kidney failure can be solved with dialysis, said Parker, but they’re wrong.

“Dialysis just barely keeps you alive,” she said.

The other answer to kidney failure is a transplant, with the kidney coming from a recent death or better, from a living donor. People don’t really need two kidneys, Parker said, and even though it’s more of a painful process for the donor than for the recipient, a life is not only saved, but the quality of life for the recipient is vastly improved.

Griggs said her father’s mother had PKD and died at 42 in 1940, but the cause of her death was only discovered after an autopsy. Griggs said the disease doesn’t fully manifest usually until a person is well into adulthood. She was tested early for PKD, at age 7, but the results were inconclusive, she said. Her three older sisters tested negative for having PKD, so she though she was safe. [Read more]



From HeraldScotland, Edinburgh

Sister-in-law saved by kidney pairing

A woman has given the ultimate gift to her gravely ill sister-in-law, donating her own kidney to a stranger to save her relative's life.

Sue Heathcote, 55, from Ayr, underwent an organ donation procedure known as kidney pairing to allow her sister-in-law Claire, 41, to receive a new kidney.

Paired donation is when a donor and recipient are incompatible but they are instead matched with another donor and recipient pair in the same situation and the kidneys are exchanged or swapped.


Claire Heathcote, a mother of two, has suffered from a form of kidney failure called Adult Polycystic Kidney Disease since birth.

In recent years her health began to deteriorate until last Christmas when her kidney function was working at only 8% of that of a healthy kidney. Unfortunately kidney dialysis was not a straight forward option and her family members were tested in the hopes of donating a kidney but were unsuitable matches.

She said: ". I was at a meeting with my doctor and we were discussing future treatment options. He mentioned 'kidney pairing'."

A computer in Bristol stores details of participating donors and recipients. Every three months it runs a check to see if any new donors match existing details on the register.

Sue said: "I was absolutely thrilled that I was able to register... in July last year Claire got a call to say that we had 'matched'. An altruistic donor had kindly donated to the 'pairing pool' and their kidney matched with Claire.

Sue added: "I had to take it easy after the operation and returned to work after about six weeks. I would appeal to everyone to consider kidney pairing. You only need one working kidney to survive."




Living with PKD and Kidney Disease

From The Straits Times, Singapore, by Salma Khalik


Every year, some people choose death over dialysis when their kidneys fail.

Without dialysis to clear toxins in their body, they are unlikely to survive long.

But there are others who are forced to forgo dialysis because they cannot afford it, or because their families said no.

At the Khoo Teck Puat Hospital (KTPH), 24 patients suitable for dialysis declined the procedure in 2011. [Read more]



PKD Research

From The Hindu Business Line, India, by K V KURMANATH

Palm-sized dialysis unit in the making

HYDERABAD, FEB 28:

You will soon hear of a palm sized dialysis machine that promises to change the way kidney patients take dialysis. Wearable artificial kidneys too are on the anvil. The man who led the research on this machine, Victor Gura, reportedly received US FDA permission to take up human trials.

This is among many critical research projects that give hopes to millions of patients who require dialysis to make up for faulty kidneys, those bean shaped filters whose work is not appreciated much. Kidney functions each time your heart beats. It clears blood of impurities and keep the system healthy, doctors say.

Awareness levels in the country on kidney failure are not as high as that of diabetes or hypertension. But doctors warn that, people who are diagnosed with either of the two or both conditions are candidates for kidney failures.

Good news is there are several advances in the field, helping the doctors in providing better and efficient dialysis methods.

“There are some ongoing research projects that will help in improve quality of life for kidney failure patients. They are working on the usability of transplanting kidneys from animals. Research would also help increase ability of the body to accept transplanted kidneys,” K S Nayak, a city-based nephrologist, said.

Global meet

Kidney specialists from across the world will discuss latest developments at the Haemodialysis University (convention) for two days here, beginning March 1.

The International Society for Haemodialysis is organising the third edition. The first and second editions were held in the US and China.

“You must ask your doctor three questions. What’s your blood sugar level, what’s your BP numbers and what’s your cholesterol level. If you have these figures on the wrong side and find protein in urine, you must know that you are a future candidate for kidney failure,” a senior nephrologists attending the conference said.

Nayak said absence of universal health coverage for of kidney failure patients was the biggest challenge in India. [Read more]

Researchers at Rensselaer Polytechnic Institute and the University of North Carolina at Chapel Hill (UNC) have created a synthetic form of low-molecular-weight heparin that can be reversed in cases of overdose and would be safer for patients with poor kidney function. 

“We took this drug and not only made it cost effectively, but we’ve also improved the properties of the drug,” said Robert Linhardt, the Ann and John H. Broadbent Jr. ’59 Senior Constellation Professor of Biocatalysis and Metabolic Engineering, a member of the Rensselaer Center for Biotechnology and Interdisciplinary Studies (CBIS), and one of the inventors of the new drug. “The synthetic version that we’ve made is reversible, it can be used in renal patients, and it doesn’t come from animals, which is a critical advance in safety.” 

Heparin is an anticoagulant, and is most commonly extracted from pig intestines in two forms: unfractionated heparin, which is commonly used in procedures such as dialysis, and a more-refined low-molecular-weight (LMW) heparin, which is used around the world for preventing dangerous blood clots. A team led by Linhardt and Jian Liu, a professor in the UNC Eshelman School of Pharmacy, created a synthetic version of LMW heparin for which there is an existing antidote. Their creation is described in an article published online February 23 in the journal Nature Chemical Biology. 

Linhardt and Liu used a chemo-enzymatic process to synthesize the drug, an approach they developed in research on a simpler anticoagulant drug published in Science in October 2011. Synthesizing LMW heparin allowed them to make many improvements on the animal-derived form of the drug currently available. Linhardt’s research supports the Rensselaer School of Science interdisciplinary theme of biomedical science and applications, and is part of a research focus on biocatalysis and metabolic engineering within CBIS. His research on LMW heparin was funded by the National Institutes of Health. - [Read more]


An analysis of intracranial hemorrhage (ICH) in a national sample of autosomal dominant polycystic kidney disease (ADPKD) patients receiving long-term dialysis has not been reported. It is often assumed that patients with ADPKD are not at increased risk of ICH after starting dialysis.

We hypothesized that patients with ADPKD would have a higher subsequent risk of ICH even after the start of chronic dialysis.

Methods: Retrospective cohort study of Medicare primary patients with and without ADPKD in the United States Renal Data System (USRDS), initiated on chronic dialysis or transplanted between 1 January 1999 and 3 July 2009, and followed until 31 December 2009. Covariates included age, gender, race, prior stroke, diabetes mellitus, dialysis modality, body mass index, serum albumin and other co-morbid conditions from the Medical Evidence Form.

Primary outcome was ICH, based on inpatient and outpatient Medicare claims, and all-cause mortality. Kaplan-Meier analysis was used for unadjusted assessment of time to events.

Cox regression was used for assessment of factors associated with ICH and mortality. We performed competing risk regression using kidney transplant and death as competing risks.

Kidney transplant was also modeled as a time-dependent covariate in Cox regression.

Results: Competing risk regression demonstrated that ADPKD had a subhazard ratio 2.97 for ICH (95% CI 2.27-3.89). Adjusted Cox analysis showed that ADPKD patients had an AHR for death of 0.59 vs.

non-ADPKD patients (95% CI 0.57-0.61).

Conclusions: ADPKD is a significant risk factor for ICH among patients on maintenance dialysis. Our Medicare primary cohort was older than in previous studies of intracranial aneurysm rupture among ADPKD patients.

There are also limitations inherent to using the USRDS database.

Author: David J YooLawrence AgodoaChristina M YuanKevin C AbbottRobert Nee
Credits/Source: BMC Nephrology 2014, 15:39

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