Walk, Race, Raft and Ride for PKD
From KCRG.com, Cedar Rapids, Iowa, by Chris Earl, Reporter
Cedar Rapids Holds Walk for Kidney DiseaseCEDAR RAPIDS, Iowa - People spent part of Saturday stretching their legs trying to stretch out awareness for kidneys.
This morning at Noelridge Park brought the 2013 Iowa Walk for PKD -- that's polycystic kidney disease, a genetic disorder that affects thousands.
Saturday's walk was part of at least 50 across the nation to get the word out about PKD and how many people are impacted by it.
One race leader also says the symptoms of this disease can go undetected.
"It can be anything from lower back pain to no symptoms at all," said John Burge of the PKD Foundation.
Burge says about 6,000 Iowans are directly affected by PKD.
From BlueRidgeNow.com, Hendersonville, NC, by Emily Weaver
Shena Mintz survived a nightmare no mother wants to deal with when she lost her firstborn child to Polycystic Kidney Disease 18 hours after her birth on Jan. 24, 2012.
The memory of that day made Mintz become an advocate for several causes. Nearly $125,000 has been raised in her daughter's memory since then for the PKD (Polycystic Kidney Disease) Foundation, Mountain View Baptist in Tuxedo and the neonatal intensive care unit at Greenville Memorial Hospital in South Carolina.
The couple hopes to educate the public about PKD and help find a cure. With the second "Ella Grace Race to end PKD" on Saturday, Mintz has several reasons to look ahead with joy and hope.
Shena Mintz is five months pregnant. She learned the news on May 20. A few weeks ago, she and her husband, Sean, found out that they are expecting another girl, who is estimated to arrive a day before Ella Grace would have turned 2.
Ella Grace Mintz died from infantile autosomal recessive kidney disease — a rare genetic disease that causes cysts to form in the kidneys and delays development of the lungs. There is a 25 percent chance that their new baby may also be born with PKD, but the Mintzes are focused on the 75 percent chance she won't.
"So far everything looks good," Shena Mintz said. "We've done some genetic testing and hopefully this baby won't have the PKD... We have a good strong faith that's getting us through." [Read more]
From OregonLive.com, Powered by The Oregonian, by Anna Marum
Two days after receiving his first round of kidney dialysis in July 2012, Ray Hennings hopped on his bike.
It was the Aloha man's first ride in months, and after just three miles, he was exhausted.
But he kept at it, and now the 59-year-old is gearing up for the three-day, 220-mile
Tour DaVita in South Carolina.
The tour, which starts Sunday, is sponsored by DaVita HealthCare Partners, a kidney care company. Hennings hopes his participation will encourage people with kidney diseases to remain active and others to consider donating a kidney to someone in need.
Hennings, who has
polycystic kidney disease, knew he was at risk for the disease from a young age. Polycystic kidney disease is genetic, and his mother, sister and cousin have all been diagnosed with it, he said. Hennings was diagnosed with the disease when he was in his mid-20s, and a few years ago, the growing cysts began to take their toll on his kidney function.
Because kidneys filter toxins from the bloodstream and help maintain a healthy red blood cell count, Hennings started to feel fatigued, had trouble remembering things and gained weight.
In 2011, his kidney function had dipped below 18 percent, and he put his name on a list for a transplant.
About a year later, Hennings started dialysis treatments, and now he goes to the DaVita Hillsboro Dialysis Center three days each week for four-hour sessions to remove the toxins from his blood.
Since starting dialysis, Hennings has lost 40 pounds and has gotten back in cycling shape – he now rides about 25 to 60 miles each day.
Hennings is still waiting for a new kidney, but he's focusing on staying healthy in the mean time.
"It makes me feel like a lot less of a victim, when there's something I have control over," he said. But his kidneys, which should weigh less than half a pound each if they were healthy, now weigh 10 pounds each, due to the growing cysts.
"I'm basically carrying a baby," he said. [Read more]
From FifeToday.co, Fife, United Kingdom
A mad group of diehard Fife Flyers ice hockey fans is set to brave the elements to raise money for Kidney Research UK, for one of its members.
The four men and one woman are preparing to take part in a white-knuckle whitewater rafting trip next month from Aberfeldy – and they are hoping to raise lots for the worthy cause.
Cath Buchan (51), another staunch Flyers supporter, suffers from polycystic kidney disease, the most common type of kidney disease, in which fluid-filled cysts grow in both kidneys and can spread to other organs. The inherited condition affects 12.5 million people worldwide and over half will have kidney failure by the time they are 60.
At an ice hockey match at Braehead arena last year there was a collection held for Kidney Research and as Cath was wearing her kidney donor card sweatshirt at the time she got involved and became a co-ordinator for the event.
Following on from this, a group of her friends from the Flyers – Robbie Craig (34); Robert Stewart (38); Paul Walker (37); Paul Lawson (36) and Lesley Herd (28); volunteered to do a fundraiser for the charity.
Robbie explained: “I had already done a whitewater rafting event for another charity and it was great fun, so when Paul Lawson was asking for people to take part in this event, we all agreed.”
The event will take place on October 6 in Aberfeldy, and Cath, although unable to take part, will be there to cheer them on.
“It is so good of them to do this and I’m grateful to them all,” she said. “I’m hoping to have a collection at the ice rink to help cover their costs and to boost the total...
...Liz McGuinness, co-ordinator for Kidney Research UK, said: “Cath is a fantastic lady who, although is sometimes unwell, still does her best to raise awareness of kidney disease.
“The rafting event is going to be fantastic, with people from all over Scotland taking part and we only have three boats left to fill.”
If you would like to donate, you can do so via the Facebook page: www.kidneyresearchukevents.org/Flyers-fans. [Read more}
From MediaPost.com, by Laurie Sullivan
The PKD Foundation wanted to raise awareness of a
genetic life-threatening polycystic kidney disease affecting about 12.5 million people worldwide. With help from BLiNQ Media, the foundation has launched a Facebook campaign that raised interaction with the content and foundation by 439%.
The Facebook campaign running in March generated more than 16,000 clicks on posts about PKD, which came in contact with 14,189 more people. The campaign's average click-through rate (CTR) was 5.1%, with the majority of new fans acquired through daily posts about National Kidney Month.
The campaign extended the foundation's reach to about 1,158% more people. The reach is defined as the available audience that has not previously engaged with the content or the page.
The goal of raising awareness has generated donations. Proceeds from the campaign will go toward research for polycystic kidney disease. Almost all impressions -- 95% -- were served on mobile devices, which produced a much higher CTR rate.
The campaign helped to generate 32,220 visits to the PKD Foundation Web site in March, up sequentially from 21,363. It received 238 online donations that month, compared with 125 in February. Of these donations, seven came directly from Facebook, the most the foundation received from the social platform.
The social campaign has also generated leads. Email signup requests rose 309% to 311 compared with the previous month. The Foundation received $540 from its text-to-donate challenge, exceeding the goal of $310.
The BLiNQ Facebook campaign has kick-started awareness, but it's not an anomaly. Luis Caballero, BLiNQ CEO, said other foundations also have begun to use Facebook campaigns to raise awareness.
Facebook retargeting capabilities rely on intent from search and context from social to produce results, which makes the media a powerful tool. "Increasing the likelihood of someone to engage in Facebook means identifying the audience in advance," Caballero said. "We determine the propensity for the audience to engage. It lets us identify Facebook members wanting to have an active conversation about a message."
Erma Bombeck, Neil Simon, and Steven Cojocaru are among those who have
died or are living with PKD.
From TheTimes-Tribune.com, Stroudsburg, PA
STROUDSBURG - People with polycystic kidney disease are invited to join the NEPA PKD Support Chapter for an information session to gauge interest in a possible support group in Scranton on Sept. 20. To RSVP, contact Michele Vecchio at 570-460-4348 or email nepapkd@outlook.com. More information: www.face book.com/NEPAPKD.
Fundraisers
From Milton.Patch.com, Milton, MA, by Bret Silverberg
The fundraiser event for baby Thomas Lane is Sept. 20 in Dorchester.
A fundraiser will be held on September 20th for Thomas Lane, who is suffering from a rare and incurable kidney disease. Thomas is the 1-year-old son of Danny Lane of Milton and his wife Johanna.
Thomas Lane has Autosomal Recessive Polycystic Kidney Disease, which affects 1 in 20,000 babies and requires dialysis and, ultimately, a transplant.
The fundraising event, A Night to Benefit Thomas’s Fight, will be held Sept. 20 at Florian Hall in Dorchester.
The attached flyer has information about monetary donation and contact numbers. [Read more]
From NorwalkReflector.com, Norwalk, OH, by AARON KRAUSE
Monroeville man has performed ceramic tile work for 49 years.
Cliff Claus said he'd never been sick a day in his life.
But the Monroeville resident, who has performed ceramic tile work for 49 years, was diagnosed with polycystic kidney disease in 2009. The disease progressed, and both of Claus' kidneys began shutting down, forcing the need for a transplant -- which he received Jan. 18.
The medical bills, however, are piling up. So a benefit spaghetti dinner is scheduled for Sept. 28 at the Norwalk Eagles Hall, 151 Cline St. Dinner will be served at 5 p.m. and a reverse raffle will take place at 7. Raffle tickets are $25, which include one meal. People who enter have a chance to win $1,200 and the winner doesn't have to be present to win. A meal ticket is $6 in advance or $7 at the door. For tickets, or to make a donation, call Deb at (419) 668-0546.
A story about Claus, his medical issues and the benefit was published recently in the Norwalk Reflector. [Read more]
From BigSkyBusiness.com, Billings, Montana, written by Press Room
Callan Taylor was born to two Billings families in October 2007. He lived but two days, due to a kidney disease. But despite the shortness of it, Callan's life has had a huge impact , as a focus of raising funds in support of healthy babies and for research on Polycystic Kidney Disease (PKD).
Last year, a golf tournament was launched in Callan's memory, in San Diego, Calif., specifically to raise research funds for PKD, which has no cure and impacts the lives of 600,000 people in the US every year. Callan had a rare form of PKD which affects infants and small children. Sadly, most do not live to adulthood.
A team of wanna-be golfers from Billings are going to San Diego to participate in the Callan Taylor Fund for Kidney Disease Golf Tournament on September 14. The team is urging everyone to make contributions to the fund through Pay Pal at http:// 2013pkd.tumblr.com/ or through the Callan Taylor Fund for Kidney Disease Facebook page.
Triggered by a genetic disorder, the fact that scientists have identified the two genes involved offers hope, and a road map to finding a cure. They have discovered compounds that seem to inhibit the genes in the formation of cysts, which cause the kidney malfunction.
Donations for the cure are also being accepted by the Billings golf team members which is headed by Reid Pyburn. Call 690-1135.
From KentonBee.com, Western New York State, by DARLENE M. DONOHUE, Editor
For nearly two decades, Kenmore native Denise Lauria Dolce has been dealing with the complications of polycystic kidney disease, a disorder in which clusters of cysts develop primarily within the kidneys. She’s now in need of continuous medical treatment as a result, so her family and friends have banded together to host a benefit to help Dolce with medical costs. [Read more]
From CrawleyObserver.co, United Kingdom
A grateful mum overcame her fear of heights and abseiled 100 feet down a castle tower to raise money for Great Ormond Street Hospital.
Nancy Rattner, 24, took on the challenge in gratitude for the treatment received by her three-year-old son Will, who has been in and out of the hospital since he was a day old.
Will has autosomal recessive polycystic kidney disease (ARPKD) - a rare genetic condition which caused cysts to grow on his kidneys – and hyperinsunlism – which causes low
blood sugar.
He has been battling his way to health thanks to a kidney transplant – with his dad, James Balestrini as the donor.
Describing Will’s battle, Nancy, of Southgate, said: “He was transferred within hours of birth because he was very blue and his blood sugar was very low. He stayed there for two-and-a-half weeks when he was first born. Since then we’ve been in and out.
“When he got to about 18 months old, they knew his kidneys were failing quite quickly and he would need a transplant within the year.”
Fortunately, Will did not have to wait a year for a donor to be found as his dad proved to be a suitable match and the operation was carried out in October.
Despite one episode of rejection in March, which saw Will’s medication change, Nancy said she could not believe the change in her son.
She said: “Before, he had a massive stomach because his kidneys were so big. They were adult size. He couldn’t eat and had a tube down his nose and did not weigh much.
“Now it’s all different. He will eat now. The first time he ate I cried. It was mashed potato and it was his favourite thing and it was all he would eat for a while.
“I really cried when he had some spaghetti bolognaise!” [Read more]
Kidney Transplants
From NewsOK.com, Norman, OK, by Jaclyn Cosgrove
Video: Following the process of getting a kidney transplant shows there are risks and rewards to the procedure.
The kidney has two main functions — to filter out waste products and to regulate blood pressure by balancing fluids, making sure a person makes urine and reabsorbs water.
When your kidneys begin to fail, harmful wastes build up in your body, your blood pressure might rise, and your body might hold onto too much fluid and not make enough red blood cells. When this happens, you need treatment to replace the work of your failed kidneys.
A kidney transplant is performed when a person's kidneys no longer function properly.
Many people who develop kidney failure are diabetic, suffer from chronic uncontrolled blood pressure or suffer from chronic inflammation that scars the tiny filters within their kidneys.
Sometimes, people suffer from congenital abnormalities, such as polycystic kidney disease, an inherited disease that's the fourth leading cause of kidney failure.
The majority of donated kidneys come from a person who has died. In some cases, a friend or family member might donate one of their kidneys to a loved one. And sometimes, an “altruistic” donor comes along, someone who donates their kidney to a stranger. You need only one donated kidney to replace the work previously done by your kidneys.
Some people fundraise before the transplant to pay for the procedure. A kidney transplant is generally an expensive procedure and can be a financial strain. One of the biggest costs is the time people spend in the intensive care unit. Also, anti-rejection drugs and other medications can cost about $3,000 a month immediately after the transplant.
Most private health insurance policies cover many expenses associated with kidney transplants, including medications. In addition, most kidney transplant candidates are eligible for Medicare, which will cover 80 percent of the cost of the transplant surgery.
What happens?Currently, about 600 people in Oklahoma are on a kidney transplant waiting list. The wait time in Oklahoma is about three years. [Read more]
From ABC27.com, Harrisburg, PA, By Dave Marcheskie
Sarah Lathrop hears all the time how she looks healthy, but the 37-year-old has a unique weight loss goal.
"I'm hoping to lose 25 pounds," she said with a laugh.
Losing weight would save Lathrop's life, but not for the reason one might think.
Understanding the reason begins with her father, Steve.
During a basketball game, Steve Lathrop was elbowed in the side. During testing, doctors discovered his kidney was covered in cysts. He was diagnosed with Polycystic Kidney Disease, or PKD, a rare disease that shuts down kidney function.
After battling the disease for years, doctors in 1999 told Steve that he needed to find a live kidney donor. Naturally, he turned to his family.
"It was discovered that my siblings and I all had Polycystic Kidney Disease as well," Sarah Lathrop said. "We were not able to give him a kidney, but it turned out my mom was a match, so she donated a kidney to my dad."
Sarah and brothers Jeff and John all struggle with PKD. In July, Jeff's college roommate stepped up and donated a kidney to the 41-year-old. He is regaining his strength and health.
According to Sarah, Jeff lost 25 pounds; the reason for her weight loss goal.
Because of PKD, Sarah said her kidneys have ballooned to the size of footballs. She explained her enlarged kidney are heavy and push on her diaphragm, making it difficult for her to breath.
"I'm at 19 percent kidney function right now with two kidneys," she said.
John, Sarah, and her dad once again are all in dire need of a live kidney donor. They hope this weekend will change that.
Dare to Donate – Times Three is the theme of their blood drive. The Lathrop family will hold a two-day event where people are welcome to donate blood, find out their blood type, and learn more about becoming a live organ donor.
Sarah said her family is searching for a willing donor with type-O blood, but as a physician's assistant she knows live organ donors are "nearly impossible." [Read more]
PKD Research
From PRUrgent.com
Role of Genes in Brain Aneurysms May Hint at Mechanism in General Population, Doc SaysUnderstanding the causes of a stroke is very important and a young researcher in Canada has fresh insights to offer.
Brain aneurysms are an acquired disease of the cerebral vessels and are present in 2 to 3 % of the general population. Brain aneurysms have a propensity to rupture and cause a type of stroke called a subarachnoid haemorrhage. Although only 9 in 100,000 people experience an aneurysm rupture in a year, understanding and predicting aneurysm rupture is critical because of the frequently severe and potentially deadly outcome of such a stroke.
While most aneurysms are sporadic, there are families in which the incidence of aneurysms is higher than in the general population. A few genetic conditions are linked to brain aneurysm formation. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is one such genetic disease. Approximately 5 to7 % of young adults with ADPKD have a cerebral aneurysm. The frequency increases to 12-15% when a first degree relative has had a brain aneurysm or when the patient has a previous history of aneurysm rupture.
PKD1 and PKD2 genes that are mutated in Polycystic Kidney Disease (PKD) are likely to play a role in vessel biology and their dysfunction lead to aneurysm formation.
"It is helpful for ADPKD patients to be aware of their increased possibility of suffering a stroke due to an aneurysm and consult their doctor about getting screened for aneurysms," said Shiona Mackenzie-Morrison, Hamilton Chapter Coordinator for The PKD Foundation of Canada. "We are extremely fortunate to have a renowned medical expert join us to share his knowledge about aneurysms at our meeting at St. Joseph's in Hamilton on September 22." [Read more]
and adults, and often results in a need for dialysis or a kidney transplant. Right now, there's no treatment or cure for PKD, but the PKD Foundation hopes to change that.
