From ImpactNews.com, Texas
The North Texas Walk for PKD/Run the Square 5K
The North Texas Walk for PKD/Run the Square 5K is planned for Sept. 21 at Southlake Town Square. Registration is at 7 a.m. The event will feature a 5K chip-timed run, a Children’s Walk and a 1 Mile Walk. Briggs Freeman/Sotheby's is donating a Children's Playhouse to one ticket winner. Tickets can be purchased on-site or at Central Market, 1425 E. Southlake Blvd., starting Sept. 6. There will also be music and a pancake breakfast. PKD is one of the world’s most common, life-threatening genetic diseases, often resulting in kidney failure and death. There is no treatment or cure.
Visit the Website: Walk for PKD
Saturday, September 21, 2013
Rustin Family Park Southlake Town Square
Registration Begins: 7:00 AM
5K Run the Square: 8:30 AM
Children's Walk: 9:00 AM
Walk for PKD: 9:30 AM
Phone: 817-455-2595
Visit the Website: Walk for PKD
Saturday, September 21, 2013
Rustin Family Park Southlake Town Square
Registration Begins: 7:00 AM
5K Run the Square: 8:30 AM
Children's Walk: 9:00 AM
Walk for PKD: 9:30 AM
Phone: 817-455-2595
From TrbLive.com, Pittsburgh, PA area, by Nancy Henry
Woman plans Connellsville fundraiser to fight kidney disease
Janet Bryner has made a cure for PKD her finish line.
Polycystic kidney disease, or PKD, is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide.
Bryner's husband Chuck passed away on Dec. 16, 2009, due to complications from this disease. She does this in his memory and has held it at Yough Park in Connellsville so local people can help with this cause.
“It affects more people than Down syndrome, cystic fibrosis, muscular dystrophy, and sickle cell anemia combined. Still, few people know about it. There is no treatment and no cure. I am trying to change that,” Bryner said.
Bryner has put together an event, now in its third year, to help raise money for PKD research.
“I'm asking area residents to join my fundraising team and we will work together to raise funds to ensure the PKD Foundation can continue to chart the path to a cure. Join with me at Yough Park in Connellsville Saturday, starting at 10 a.m., then ask your friends, family members and co-workers to donate to our cause. We will have a great time and make a real difference for those with PKD,” Bryner said.
Registration for the walk is free. Bryner counts on donations from those in attendance. She and her husband's best friend, Sam Giles, have put together a basket auction and will sell food, T-shirts and hats to raise funds. There will be a DJ from noon-3 p.m., plus face painting, and Seth the Balloon Dude, who will make animals, hats or other creations for kids.
The Chinese auction will have nice baskets to win; businesses have been generous, and this year offers the most baskets that organizers have had.
“More of my friends and family help out each year, and Sam really works hard pounding the pavement to gather so many donations,” Bryner said. “All four of my children, who help, too, have PKD. Besides losing my husband to this disease, my kids are why my goal is to find a cure. I have met a lot of people doing this, and that helps increase awareness and get the word out.”
For more information on Saturday's event, call Bryner at 724-434-4821. There is a Walk For PKD event page on Facebook.
For the past 3 years, Mike Stetzel’s name has appeared on the national donor list as a person in need of what could prove to be a life-saving kidney transplant. On Sunday, Stetzel was the focus of a powerful message at Mission Point Community Church, Winona Lake.
Mission Point Community Church Lead Pastor Kondo Simfukwe pleaded with the congregation to consider the incredible gift of donating a kidney to Stetzel. Simfukwe relayed, “Mike has to go to dialysis. If Mike stopped going to dialysis; stopped that weekly process, he would die in less than 30 days.”
Approximately five years ago, Stetzel started noticing some health concerns. After undergoing testing, he was diagnosed with polycystic kidney disease, a disorder causing clusters of cysts to develop primarily within the kidneys. StaceyPageOnline.com had the full story in December 2012. [Read more]
Polycystic kidney disease, or PKD, is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide.
Bryner's husband Chuck passed away on Dec. 16, 2009, due to complications from this disease. She does this in his memory and has held it at Yough Park in Connellsville so local people can help with this cause.
“It affects more people than Down syndrome, cystic fibrosis, muscular dystrophy, and sickle cell anemia combined. Still, few people know about it. There is no treatment and no cure. I am trying to change that,” Bryner said.
Bryner has put together an event, now in its third year, to help raise money for PKD research.
“I'm asking area residents to join my fundraising team and we will work together to raise funds to ensure the PKD Foundation can continue to chart the path to a cure. Join with me at Yough Park in Connellsville Saturday, starting at 10 a.m., then ask your friends, family members and co-workers to donate to our cause. We will have a great time and make a real difference for those with PKD,” Bryner said.
Registration for the walk is free. Bryner counts on donations from those in attendance. She and her husband's best friend, Sam Giles, have put together a basket auction and will sell food, T-shirts and hats to raise funds. There will be a DJ from noon-3 p.m., plus face painting, and Seth the Balloon Dude, who will make animals, hats or other creations for kids.
The Chinese auction will have nice baskets to win; businesses have been generous, and this year offers the most baskets that organizers have had.
“More of my friends and family help out each year, and Sam really works hard pounding the pavement to gather so many donations,” Bryner said. “All four of my children, who help, too, have PKD. Besides losing my husband to this disease, my kids are why my goal is to find a cure. I have met a lot of people doing this, and that helps increase awareness and get the word out.”
For more information on Saturday's event, call Bryner at 724-434-4821. There is a Walk For PKD event page on Facebook.
Kidney Donors
From StaceyPageOnline.com, by Stacey Page
Kidney Donor Needed For Life-Saving MissionFor the past 3 years, Mike Stetzel’s name has appeared on the national donor list as a person in need of what could prove to be a life-saving kidney transplant. On Sunday, Stetzel was the focus of a powerful message at Mission Point Community Church, Winona Lake.
Mission Point Community Church Lead Pastor Kondo Simfukwe pleaded with the congregation to consider the incredible gift of donating a kidney to Stetzel. Simfukwe relayed, “Mike has to go to dialysis. If Mike stopped going to dialysis; stopped that weekly process, he would die in less than 30 days.”
Approximately five years ago, Stetzel started noticing some health concerns. After undergoing testing, he was diagnosed with polycystic kidney disease, a disorder causing clusters of cysts to develop primarily within the kidneys. StaceyPageOnline.com had the full story in December 2012. [Read more]
From CourierNews, A Chicago SunTimes Publication, by Mike Danahey
ELGIN, IL — Peter Giannaris of Elgin is looking forward to being able to do something he hasn’t done in 12 years that most of us see as a chore and take for granted.
“My buddies joke when they have to (urinate) — sometimes on the golf course — and kid that they have to go again. I say back, ‘I’ll trade you.’ They don’t realize it’s something special,” Giannaris said Tuesday afternoon.
Giannaris, 38, has polycystic kidney disease. The Mayo Clinic website explains the condition “is an inherited disorder in which clusters of noncancerous, fluid-filled sacs (cysts) develop within the kidneys ... (and) can cause cysts to develop elsewhere in the body, too. The disease causes a variety of serious complications.”
So Wednesday morning, Giannaris is set to undergo his fourth kidney transplant after living the past 12 years on dialysis, three times a week, 12 total hours a week.
Giannaris lives in the Century Oaks subdivision on the city’s northwest side and had been a manager at Paul’s Restaurant in Elgin. For the past year or so, he’s been taking the five-hour drive up to the Mayo Clinic in Rochester, Minn., so often that it didn’t allow him to continue working.
At Mayo, Giannaris has been part of a clinical trial and said a pharmaceutical company has been paying for his care. The clinic’s transplant center is one of the few in the United States that handles transplants for “highly sensitized” patients such as Giannaris who have immune systems that are very prone to rejecting a transplanted organ.
From WickedLocal.com, Melrose, MA Free Press,
David Shakespeare, a resident of Melrose and an environmental analyst in Boston, needs your help. And the title of his website says it all, in no uncertain terms: Shakespeare Needs a Kidney.
David Shakespeare, who has lived in Melrose with his wife for the past 10 years, recently launched his own website (ShakespeareNeedsAKidney.com) in search of a living kidney donor.
He suffers from Polycystic Kidney Disease (PKD), an incurable hereditary ailment that has steadily reduced his kidney functioning throughout his adult life. PKD has already claimed the lives of his brother and mother, and it now threatens Shakespeare’s.
Shakespeare is embarking on a regional and nationwide media campaign to develop a social network focused on finding a suitable kidney donor. Along with his website, he has launched a Facebook page and is seeking exposure for his campaign through radio, TV and newspapers.
This campaign is Shakespeare’s only real hope. Kidneys from living donors last twice as long as those from deceased donors, and the wait time in New England for a kidney from a deceased donor can be up to five years.
“My health is deteriorating and I get tired all the time,” said Shakespeare, 54. “With the help of a living donor, I know I can resume the active life I once shared with my wife and others, as well as my work on behalf of the environment and my advocacy on behalf of PKD research and living organ donation.”
...For further information or to contact Shakespeare, visit ShakespeareNeedsAKidney.com
or call 617-505-0683.[Read more]
From articles.CoastLinePilot.com, Laguana Beach, CA, By Rhea Mahbuban
Scott Sutton relied on his passion to get him through dialysis, and a fan eventually gave him a kidney.
Scott Sutton's art saved his life.
Or, perhaps more accurately, a collector did.
The Austin, Texas, resident began dialysis 11 years after being diagnosed with polycystic kidney disease in 1991. It kept him alive but caused an inordinate amount of pain, he recounted. After two years of treatment, Sutton's wife thought he wouldn't last much longer.
Word of the artist's deteriorating health reached a buyer who had followed Sutton's career and purchased some limited-edition paintings. In a moment of serendipity, she offered to give him a kidney.
His donor, whose blood type was a match, underwent a battery of tests to determine her compatibility in 2005, and the transplant was done some time that year. Sutton, a Corona del Mar High School graduate, noted, with awe apparent in his voice, that the new organ was working well before he was out of surgery. [Read more]
From PAHomePage.com, Stroudsburg, PA, by Jayne Ann Bugda
Stroudsburg, Monroe County-The NEPA Polycystic Kidney Disease Support Chapter, part of the national PKD Foundation, kicks off this new support chapter with an informational session scheduled for September 20, 2013, beginning at 6:00 p.m. and ending at 7:30 p.m. The session will be held in the Brodhead Conference Room in the Pocono Medical Center, 206 East Brown Street, Stroudsburg, PA. Refreshments will be provided. There is no cost to attend this event.
Guest speakers include Representative Rosemary Brown, who will speak on how PKD has affected her family;Cindy LeBlanc, Chapter Relations Manager for the PKD Foundation; Dr. Peter Casale, board-certified nephrologist, who will explain what polycystic kidney disease is and what treatments are available; Cate Lewis, RN, BSN, CNN, an educator with the Kidney Smart Program; and Jim Lambert, executive director of The Waste Authority, who will relate his personal experience as a living kidney donor.
The NEPA PKD Support Chapter is a dedicated group of volunteers who support the PKD Foundation's mission to find treatments and a cure for polycystic kidney disease. Founding members include Michele A. Vecchio, Chapter Coordinator; Heidi Fareri, Education Coordinator; Kathy Sickler, PKD Walk 2014 Coordinator; and Alma Ruiz-Smith, Fundraiser Coordinator.
If you have PKD, have been newly diagnosed, or know someone with PKD, please consider attending this event. If you have any questions, wish to volunteer for future events, or would like to RSVP for the Kickoff, please contact Michele A. Vecchio at 570-460-4348, or send an email to nepapkd@outlook.com.
Or, perhaps more accurately, a collector did.
The Austin, Texas, resident began dialysis 11 years after being diagnosed with polycystic kidney disease in 1991. It kept him alive but caused an inordinate amount of pain, he recounted. After two years of treatment, Sutton's wife thought he wouldn't last much longer.
Word of the artist's deteriorating health reached a buyer who had followed Sutton's career and purchased some limited-edition paintings. In a moment of serendipity, she offered to give him a kidney.
His donor, whose blood type was a match, underwent a battery of tests to determine her compatibility in 2005, and the transplant was done some time that year. Sutton, a Corona del Mar High School graduate, noted, with awe apparent in his voice, that the new organ was working well before he was out of surgery. [Read more]
Living with PKD
Guest speakers include Representative Rosemary Brown, who will speak on how PKD has affected her family;Cindy LeBlanc, Chapter Relations Manager for the PKD Foundation; Dr. Peter Casale, board-certified nephrologist, who will explain what polycystic kidney disease is and what treatments are available; Cate Lewis, RN, BSN, CNN, an educator with the Kidney Smart Program; and Jim Lambert, executive director of The Waste Authority, who will relate his personal experience as a living kidney donor.
The NEPA PKD Support Chapter is a dedicated group of volunteers who support the PKD Foundation's mission to find treatments and a cure for polycystic kidney disease. Founding members include Michele A. Vecchio, Chapter Coordinator; Heidi Fareri, Education Coordinator; Kathy Sickler, PKD Walk 2014 Coordinator; and Alma Ruiz-Smith, Fundraiser Coordinator.
If you have PKD, have been newly diagnosed, or know someone with PKD, please consider attending this event. If you have any questions, wish to volunteer for future events, or would like to RSVP for the Kickoff, please contact Michele A. Vecchio at 570-460-4348, or send an email to nepapkd@outlook.com.
PKD Treatment
From PMLive.com, by Phil Taylor
FDA turns down Otsuka's kidney disease candidateThe US Food and Drug Administration (FDA) has followed the advice of its advisory committee and declined to approve Otsuka Pharmaceutical's tolvaptan as a treatment for patients with polycystic kidney disease (PKD).
However, the FDA sent a complete response letter to the company indicating that it "cannot approve the application in its present form" and requesting "additional information", said the pharma company in a statement.
It follows a recommendation from the agency's Cardiovascular and Renal Drugs Advisory Committee, which voted nine to six not to approve tolvaptan based on current evidence.
The drug is a first-in-class vasopressin V2-receptor antagonist designed to inhibit the formation, proliferation and growth of cysts that characterise ADPKD, which affects around 120,000 adults in the US and is the fourth most common cause of end-stage renal disease (ESRD). The FDA granted the drug a priority review in this indication because there is a lack of effective therapies for ADPKD.
Tolvaptan is already approved in the US under the Samsca brand name for the treatment of low blood levels of sodium (hyponatraemia), which can be caused by conditions such as organ failure and pneumonia.
However, the FDA ruled earlier this year that it should not be used for longer than 30 days or in patients with underlying liver disease due to possible liver injury leading to organ transplant or death. [Read more]
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