From PKD Foundation of Canada, March 2014 PKD eNews
Story of Hope: Laura Malcolm
Two years ago, I found out I was pregnant with my first child. At our 20-week appointment, we learned that our child had extremely enlarged kidneys. At the time, the doctors didn't know exactly what the cause of these abnormal kidneys, so both my husband and I were sent for several tests, as was our child in utero. After the testing, it was determined that my kidneys and those of my husband were completely normal. We had no history of kidney disease in either of our families, so the doctors were initially puzzled. Finally, at about the 7 month mark, the results came back and our child was diagnosed with autosomal dominant polycystic kidney disease or ADPKD. We had never heard of PKD, so thus began our search for answers. Though some of the medical team told us to “expect the worst”, even going as far as encouraging us to terminate the pregnancy, my husband Nick and I never gave up hope! [Read more]
PKD Fundraising
Pocono Manor kidney disease sufferer campaigns for cure
A Pocono Manor woman is turning a kidney disease diagnosis into an opportunity to raise money for a cure and connect with others also facing a risk of kidney failure.
Michele Vecchio has started a club to raise money to cure the genetic polycystic kidney disease.
The club will hold a Hippies for Hope fundraiser, with an option for attendees to dress the part, from 4 to 7 p.m. Sunday at Peppe's Bistro at 100 Eagle Valley Mall in East Stroudsburg.
Vecchio said she had never heard of PKD when she went to the doctor for unrelated chest pain eight years ago.
After a negative cardio work-up, a CAT scan revealed something else — innumerable cysts throughout her kidney and liver.
With PKD, the cysts multiply on the kidneys and cause them to grow in size, sometimes leading to kidney failure or death.
Though she was fortunate to find out in the early stages, Vecchio said her children have a 50 percent chance of having the disease as well.
She manages the disease, but doctors have told her there is a risk she will be on dialysis by age 60, awaiting a transplant.
"I'm in stage 1. I'm more fortunate than most, and this is why I'm able to do this and founded this chapter," she said.
Outwardly, Vecchio said her disease is not visible. But it creates fatigue and constant urinary tract infections in sufferers.
Others who want to help or have the disease as well have joined with her on a fundraising committee, and businesses have come together to help with Sunday's event.
FACES, the Faith, Accountability, Community, Education and Services organization, is the main sponsor and seeks an end to child abuse.
Local artist Jim Smeltzhas donated art, Coach has donated bags, Hideaway Hills Golf Club has donated a golf package, and other organizations have also donated items and services for auction Sunday.
Tickets to the event cost $35 and are available at www.NEPAPKD.myevent.com.
The cost includes three tickets to the Chinese auction, a food buffet and one free house wine, beer or soda.
KENDALL woman Michelle Dalton said she was excited as she parted company with her lovely long locks last week. She organised a very public haircut with Lakewood hairdresser, Karen Green, as part of a fundraising drive for Kidney Health Australia.
"I decided I'd ask people to make a donation to help fight kidney disease if I promised to cut off my very long hair," Michelle said. "I've always had fast growing hair, so I was a natural for this kind thing."
The Dalton family used social media and their network of friends to raise awareness about the fundraising campaign. Before she took her seat in the hairdresser's chair Michelle had well exceeded her $1,000 target.
"The total this morning was $1,947 and we have collected lots more today," Michelle said. "We've had lots of support from local Rock 'n Roll clubs and from hot rod clubs in Port Macquarie and Newcastle."
As a secondary benefit, Michelle now plans to send away her hair to be made into wigs.
"The people at Pantene Beautiful Lengths create free, real-hair wigs for women with cancer, so hopefully my contribution will be useful," she said.
As someone facing surgery or a possible kidney transplant, Michelle is acutely aware of the need for research into kidney disease. Michelle has polycystic kidney disease (PKD), which is a genetic condition characterised by the growth of cysts on the kidneys. There is currently no cure, but medical treatment can manage symptoms and reduce the risk of complications. Michelle says she feels reasonably well at the moment.
"I drink plenty of water and have had to change my diet completely," she explained. [Read more]
A COUPLE will embark on a ten-mile charity walk this weekend in honour of their baby daughter who died last year.
Suzanne and Peter Newman, from Leigh, were told 33 weeks into Suzanne’s pregnancy their baby would live for less than an hour after birth, due to an extremely rare kidney disease.
The couple decided not to continue with the pregnancy and in October last year Suzanne was induced at 36 weeks.
After the birth the couple stayed the night with their daughter before she was blessed the following morning.
Suzanne and Peter were given bereavement support by Havens Hospices and on Sunday will take part in the Havens to Havens fundraising walk.
Suzanne, 32, said: “We’d read books on grief and bereavement in the days after Tilly was born and although we obviously weren’t OK, we were a new kind of OK.
“My sister was expecting a baby around the same time as Tilly, and I actually had my first session on the day she gave birth so it came at a really good time for me. It worked well.
“As much as Peter and I talk, and we’re very open, it was nice to have someone completely independent.”
The couple have since undergone genetic testing for autosomal recessive polycystic kidney disease and found they do not have the dominant gene and are just carriers.
Peter said: “It means that for our next pregnancy the doctors can look for it at ten to 12 weeks and determine whether the baby has it or doesn’t.
“There are lots of smaller charities supporting families like ours. The work they do seems to have a much bigger impact because it’s so personal, and it’s hit a chordwith us.”
Those wishing to take part in the walk can register on Sunday from 9.30am at Little Havens Hospice, Thundersley.
People joining in the Havens to Havens fundraising event can take part in a five or ten-mile walk through Thundersley’s woodlands, Hadleigh and Leigh.
Organisers will share lots of local history along the route, and there will be plenty of family fun, with activities for children and adults and cream teas at the midway point.
For more information on the walk, visit havenshospices.org.uk/havenstohavenswalk or call 01702 221669.
Dialysis Trends
If anyone has a handle on renal and dialysis outcomes in the U.S. and around the world, it's Friedrich Port, MD, a distinguished senior investigator, past president, and co-founder of Arbor Research in Ann Arbor, Mich., which runs the Dialysis Outcomes and Practice Patterns Study (DOPPS).
DOPPS is known for its hefty volume of research in nephrology outcomes -- it's generated more than 170 studies -- and has given researchers a comparative perspective with its collection of both U.S. and international data.
Port was also the deputy director of the U.S. Renal Data System (USRDS) from 1988 to 1999, and is an emeritus professor of nephrology and epidemiology at the University of Michigan.
At this year's National Kidney Foundation meeting, Port was presented with the David M. Hume Memorial Award, given to a distinguished scientist-clinician in kidney and urologic diseases. He spoke with MedPage Today about changes in dialysis practice over time, upcoming trends in dialysis management, and having DOPPS and USRDS back under one roof. Here's the edited transcript of that conversation.
What key projects are you involved with now at Arbor Research?
I've been involved in various projects, including the transplant registry and some Centers for Medicare and Medicaid Services (CMS) demonstration projects. My activity now focuses on DOPPS projects, and there are multiple. As of this year, we've now expanded to peritoneal dialysis with PDOPPS, and now we have the chronic kidney disease (CKD) study, or CKDopps, to learn about the progression of CKD and the transition to dialysis.
What has been the most valuable research to come out of DOPPS?
The main goal is to correlate practice with outcomes, so we have groups of patients in dialysis units who are undergoing certain practices, and we see big differences in treatment from dialysis unit to dialysis unit. We use a random selection of dialysis units in order to have a mix of practices.
In terms of outcomes, we look at the management of anemia, phosphorus, the prescribing of dialysis, what kind of dialysis, how many hours should we be dializing. We are clearly finding that longer treatment sessions are associated with better outcomes, including lower mortality and fewer hospitalizations. We've also found that quality of life is very important for outcomes, and that depression is common and associated with higher mortality. We've also seen that for patients who have a slower recovery after dialysis, who feel drained and washed out, their quality of life is poorer and their mortality is higher.
Vascular access is also a key issue. We just reported here at this meeting that the U.S. is actually behind other countries regarding vascular access. [Read more]
PKD Research
From Business Wire. Press Release
This report provides comprehensive information on the therapeutic development for Polycystic Kidney Disease, complete with comparative analysis at various stages, therapeutics assessment by drug target, mechanism of action (MoA), route of administration (RoA) and molecule type, along with latest updates, and featured news and press releases. It also reviews key players involved in the therapeutic development for Polycystic Kidney Disease and special features on late-stage and discontinued projects.
The report enhances decision making capabilities and help to create effective counter strategies to gain competitive advantage. It strengthens R&D pipelines by identifying new targets and MOAs to produce first-in-class and best-in-class products.
Companies Involved in Therapeutics Development
Drug Profiles
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