Walk for PKD
Briggs Freeman Sotheby’s International Realty | Run for Hope. Run for PKD
Carolyn Hill Morris and friends join Briggs Freeman Sotheby’s International Realty in supporting the PKD Walk/Run on September 19 at Southlake Town Square.
For the 11th consecutive year, North Texas is home to one of the largest, and most exciting, events raising funds and awareness for those affected by Polycystic Kidney Disease.
This year the PKD Walk/Run will be held on September 19 at Rustin Park in Southlake Town Square and will feature a Children's Chalet Playhouse Raffle. The playhouse will be on display at the North Texas Walk for PKD, and the winner will be drawn October 4 at 5 p.m. at Octoberfest, also held at Southlake Town Square.
Race day begins with a free pancake breakfast, hosted by the Southlake and Colleyville Lions Club. The timed 5K run, starts at 8:00 am, a children's walk at 9 am, and the walk for PKD will stride out at 9:30 am. Following the race, a fun kids’ area is the place to celebrate crossing the finish line.
Last year more than 800 people tied on their sneakers for the event, which turned out to be the fourth largest PKD walk out of 60 races held across the country.
“We can’t say enough about the wonderful people who support us every year,” says Carolyn Hill Morris, Volunteer Walk Coordinator. “The girls from National Charity League, the boys from Young Men’s Service League and the kids from SASO (Student Athletes Serving Others) have done so much to raise awareness and grow participation. This is a great kickoff to our fundraising season.”
Recent reports show that PKD affects more than 600,000 Americans. The incurable disease causes the growth of cysts in the kidneys and leads to kidney failure. Clinical trials searching for a cure are on-going, as is research in medical centers across the country, including the University of Texas Southwestern.
Briggs Freeman Sotheby’s International Realty is sponsoring the North Texas Walk/Run for PKD. The Children’s Chalet Playhouse is sponsored by Wynne Moore of Briggs Freeman Sotheby’s International Realty.To register for the walk/run or to purchase playhouse raffle tickets, go to walkforpkd.org/northtexas.
President and CEO Robbie Briggs independently owns and operates Briggs Freeman Sotheby’s International Realty.
From KYTX, Channel 19, CBS Affiliate, Tyler, TX, By Gerardo Martinez
ETX family battles rare kidney disease
(Photo Courtesy: PKD Foundation)
It's a devastating disease that has no treatment or cure and affects millions of people. Polycystic Kidney Disease, or PKD is one of the most common life-threatening genetic diseases.
"I want to do as much as I can while I'm younger because I know when I get older that this disease will take over my life,” said Ashley Stamps who is diagnosed with PKD.
It is a condition that causes a kidney to swell up to the size of a football covered in cysts that could pop at any moment and ultimately results in kidney failure.
“When those cysts bust, there's not much they can do for you. It's not something I would wish on my worst enemy,” explained Stamps. “But seeing my 28-year-old brother crying because he can't stand the pain and having to drive to the emergency room. It's not something I care for."
The disease has affected two of her siblings, her niece and her father.
Stamps says she’s not surprised, because PKD has a 50% chance of being passed down from parent to child. And with three children of her own, it's a chance Stamps says terrifies her.
"I'm not worried about death. That's inevitable as well. My biggest fear is not seeing all three of my children graduate. My biggest fear is one of my children having the condition,” Stamps said through tears. “And knowing that they might not make it to 60, because of me. Because I have this."
Right now, PKD has no known cure and no treatment.
"That's why I wanted to bring awareness,” said Stamps. “People need to know that this disease can kill. It can change your life.”
With the PKD Foundation leading the efforts to develop a cure, Stamps has hope that one day her children will not have to live in fear.
"I just want people to know that it's there. It's real. And we need help finding a cure,” said Stamps.
The East Texas Chapter of the PKD Foundation will hold a 'Walk for PKD’ fundraiser event in Longview on October 3rd. For more information on the event, click here.
Willie Briggman is not one to complain, but he admits living with Stage 5 renal polycystic kidney disease is hard.
Fatigue, hypertension and muscle cramps are among the symptoms of the chronic kidney disease he inherited from his mother. He spends 12 hours a day, seven days a week on dialysis. Briggman lost one of his kidneys in 1998, and the remaining one is deteriorating.
"Some days I am so fatigued that I cannot really do much or lift nothing heavy," said Briggman, who is currently awaiting a kidney transplant.
"I am looking for a donor but it's also about getting awareness out about kidney disease," he said.
His escalating medical costs have his loving wife, Menika, worried. Briggman, who lost his job at Zeus Industrial Products Inc., is on 15 different medications.
"One medicine is like $2,000, and he has to take that for a year. He's on four different types of blood pressure medicines," Mrs. Briggman said.
"It's been pretty difficult. It can be hard just doing everyday life activities," she said.
Mrs. Briggman has become somewhat of a quiet warrior in trying to raise funds for her husband's care, in addition to helping raise awareness about kidney disease.
"I research about polycystic kidney disease and tell people about being an organ donor on my Facebook page. It could save lives. I've just been advocating and joining different online organizations," she said.
She has set up a crowdfunding campaign to raise funds for her husband's medical expenses at (http://www.gofundme.com/x3tatg) and also established the Willie Briggman Kidney Fund, a separate savings account through which she is collecting donations.
Mrs. Briggman is also selling T-shirts, and she encourages people to call the Medical University of South Carolina in Charleston at 843-792-5097 or the Georgia Regents Medical Center in Augusta at 706-721-2888 if they would like to become a kidney donor. Her husband's blood type is A, but O-positive and O-negative individuals can also be evaluated to become a donor.
"If someone is evaluated and can become a donor, their expenses -- surgery, aftercare, whatever -- will be covered by our insurance. We'll also pay the hotel expenses for whoever comes with them," Mrs. Briggman said.
The Briggmans are not alone in battling kidney disease; hundreds of residents from Orangeburg and surrounding communities are expected to participate in the 10th annual Kidney Walk.
Some of the group gathered at the National Kidney Foundation of South Carolina’s kick-off luncheon on Sept. 3, at the Orangeburg County Fine Arts Center. The Kidney Walk is set for 6 p.m. Thursday, Oct. 22, in Edisto Memorial Gardens. The Regional Medical Center is the presenting sponsor. [Read more]
From Herlad Argus, LaPorte, Indana
Families unite in effort to end genetic kidney disease
The Walk for PKD is in full swing with thousands committed to fundraising to stop PKD from affecting future generations.
The new messaging — "PKD stops with me" — is deeply personal for so many families affected by PKD who are doing everything in their power to fund research and education so treatments and a cure for PKD can be discovered and delivered.
One of the families walking is "Team Chadwick." La Porte County Parks recreation and education programmer Laura Moyer is the team captain, as well as being a living donor kidney receipent. She, along with 15 of her immediate families members, are affected with this disease.
She will join thousands nationwide to come together and walk in support of those affected by polycystic kidney disease.
The 2015 Northern Indiana Walk for PKD is planned for Saturday at Creek Ridge County Park.
PKD patients, their families, friends, and members of the PKD medical community will be fundraising and walking together to unite to fight and end PKD. Registration is at 9 a.m. with the walk beginning at 10 a.m. Activities for children will take place at 10.
Moyer was the founder of the Northern Indiana Walk and Chapter and has been participating in the Walk for PKD with her family since 2007.
Since the walk's inception along with other fundraiser's Moyer champions she has raised nearly $100,000 for the cause in La Porte County, to end PKD.
The money raised supports the PKD Foundation's efforts to fund research to find treatments and a cure, and to provide information and support to people affected by PKD and their caregivers.
"The Walk for PKD is an opportunity for families to raise awareness and money for research and to support other families going through the same thing," Moyer said. "The idea of being able to do something for future generation means more than I can say."
Register for the Northern Indiana Walk for PKD atwww.walkforpkd.org/northernindiana.
From CBS 2 and Fox 28, Cedar Rapids, Iowa
Supporter Walk for PKD
A big crowd showed up at Noelridge Park on Saturday for an event to take steps to fight a disease. Polycystic Kidney Disease, or PKD, is a genetic condition. It occurs when cysts grow in the kidneys, eventually leading to kidney failure. Right now, there's no treatment or cure for it. "It's real exciting to see everybody out here walking today. The walk has grown significantly over the last couple years and the money that we're raising will be used to help fund fellowships for research in PKD," said John Burge, PKD walk coordinator. Since 2000, the Walk for PKD has raised nearly $24 million to support research and the work for a cure.
Living With PKD
And it’s funny now, he says, looking back on it, that his diagnosis came that way — with an ultrasound, like pregnant women get.
“How long have you had polycystic kidney disease?” the doctor asked matter-of-factly, but Earl just gave him a long, blank stare. He had never heard of it before. And quite frankly, he was a more worried about his bursting appendix at the moment.
Surgery took care of that problem, then the hospital sent Earl to a kidney specialist, who explained the symptoms of PKD can go undiagnosed for years, masquerading as the routine problems of middle age. High blood pressure. Backaches. Weight gain. No, Earl wasn’t as slender as he used to be. But he didn’t realize that some of the extra padding around the middle came from swollen kidneys.
PKD is an inherited disorder that causes noncancerous cysts to grow on the kidneys, which accumulate fluid and start expanding. In the long run for Earl, it will inevitably lead to kidney failure, requiring first dialysis and then a transplant. But until that happens, some patients can live with it for decades without noticing much of a problem.
Not Earl.
Now 36 years old, his kidneys still function reasonably well, but they’ve swollen to an extraordinary size, even by PKD standards. They’re as big as a full-term baby.
Each.
And that’s pushing other internal organs out of place and squeezing them against his rib cage, causing problems that a lot of women will recognize: Heartburn. Constant nausea. Shortness of breath. Swollen ankles and feet. Frequent trips to the bathroom. And lack of sleep. [Read more}
From The Leader, Deeside, UK, by: David Humphreys
RECEIVING a life-saving organ transplant was like “a light being turned on” according to a Deeside athlete.
Speaking 10 years after a vital kidney operation, Neil Dunn said the procedure had been brought the “waiting game” of treatment to an end.
Mr Dunn, 64, of Cefna Close, Connah’s Quay, was speaking after winning four medals at the World Transplant Games in Argentina.
At this year’s event Mr Dunn, who is a coach with Deestriders Running Club, triumphed in the five kilometre event, won silver in both the 400 metres and 800 metres and bronze in the 1,500 metres.
In 2005 Mr Dunn had a kidney transplant in the Royal Liverpool Hospital and began competing at the British Transplant Games the following year.
He was in need of a transplant after he developed the genetic condition polycystic kidney disease (PKD).
Before his illness he had run half-marathons and marathons but since the transplant he has concentrated on shorter track races and has won numerous medals at the annual British Transplant Games.
Mr Dunn explained the experience of going through the transplant 10 years on.
“It's very difficult to express what it is like to people who haven’t been through this,” he said.
“It’s a genetic condition I have, a long term thing and nothing could be done about it besides a transplant.
“It was like a waiting game but once I’d had it [the transplant], it was like a light switch being turned on.
“The change was amazing.”
In 2013, Mr Dunn was part of the 140-strong Great Britain and Northern Ireland squad In Durban, South Africa where he won gold in the over-60s’ 1,500m, silver in the 800m and bronze in the 5km cycling time trial.
He qualified for the World Games at last year’s British championships in Bolton, winning the 400m and 800m, coming second in the 1,500m and third in the time trial.
He said: “It was very good, I lost my 1,500m title but gained others.
“The people are fantastic, everyone has their own stories, it’s a really good event.
“The next British games is in Liverpool next year with the world games in Malaga after that so I'’l need to improve my change of pace.
“There are certain things I want to do before that yet though.”
The Argentina games took place in August featuring more than 1,000 athletes from 55 countries in a range of disciplines.
Thomas Jordan, 58, spends more than 10 hours each week on dialysis. If he found a matching kidney donor, his whole life would change, he said.
Last year, both of Jordan's kidneys were removed after years of complications from polycystic kidney disease, a disorder where fluid-filled cysts develop in the kidneys.
Jordan's brothers, wife, sister, daughter, cousins and friends offered to donate a kidney to him, he said. However, all had reasons they could not donate, such as high blood pressure.
An Air Force and Army veteran who now lives in Milan, Jordan first learned he had the disease when deployed to Germany in 1986. He served in the Air Force from 1974-1978 and the Army from 1979-1992. The disease did not give him any problems until 2004, he said, but then started causing complications with breathing.
In 2012 he started dialysis, and the kidneys were removed last year. Each was ten pounds when removed, he said.
Jordan is on a wait list for a kidney donation. He said he is often exhausted and can only drink about 32 ounces of fluid each day. When in a nutrition class, he heard that people need to drink around 60 ounces of water a day, he said.
"I can't even drink half of what I'm supposed to drink," Jordan said.
Jordan said that if he had a donated kidney, he could lift more weight, drink more liquids and have more free time during the week. He also would not have to notify the dialysis clinic months in advance when he wants to leave town so they can find another clinic for him.
"It'd be a big difference," he said. "I'd be free to take vacations. I can't lift over five pounds. I might be able to lift a little bit more."
And it’s a gutsy name, too. It took some gumption for the Woods family in Newport, Tennessee, to come up with a name like The Grease Rack. But it was a stroke of genius. People have remembered it over the years and have flocked there for platter-sized steaks, despite the restaurant’s off-the-beaten-path location. You take a road that bisects a hillside cemetery to get there.
But the Woods family has never been short on fortitude. Inherited polycystic kidney disease has decimated their ranks, but they cook on. Near the restaurant is the small building where the late Earl Woods, the restaurant’s founder, took his dialysis treatments. A plaque right inside the Grease Rack’s front door honors over 175 organ donors. Oris Cagle, a friend of the Woods family, was the organizer of the Earl Woods Chapter of Organ Donors. Back during the days of pop-a-top Budweiser cans, the family saved aluminum beer tabs to help raise funds for kidney patients.
Kidney disease killed Earl Woods and two of his sons. Earl’s son Buddy, who now runs the restaurant, has been kept alive with a transplanted kidney, donated by his wife.
Our summer 2015 return visit to The Grease Rack was bittersweet. We were pleased to learn that The Grease Rack is staying in the family, under the management of Buddy Woods. But his mother Joyce, who had been known to throw a potato across the kitchen when someone rushed her, is now in assisted living. Her daughter Judy, we learned this summer, passed away several years ago. Interviewing Joyce and Judy was a joy. They held nothing back.
“Earl tried slot machines in here, but that was about the time a new district attorney general came into office and everybody had to get rid of all that stuff,” Joyce once told me. “We sold liquor down through the years. The last time they got us for selling without a license, we decided no more liquor.”
Although Joyce has hung up the tongs, her method of dunking steaks in a soy sauce bath before grilling them continues on at The Grease Rack.
Just like the architecture, the menu has meaning. Bite-sized beef tips, known as “Baby Steak,” were added to the menu when Earl had to reduce his meat consumption. The strip steak covered in fried onions is known as “Harold’s Special,” named for Harold Smith, who worked at the Stokely plant down the hill and often lent his maintenance skills when something needed fixing at the restaurant.
From pumping Texaco gas in the early days to serving up ribeye steaks and New York strips today, community connection has always defined The Grease Rack. And so has perseverance.
“You learned a lot of things from Joyce,” her son Buddy tells us. “One of those things is work.”
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