From MMD Newswire
Cincinnati 5 year old writes a book about his ''Bumpy Kidneys''
Logan's Got Bumpy Kidneys
You might not see them, but he's going to tell the world about it...and he's choosing March, National Kidney Month, to get started.
Cincinnati, OH (MMD Newswire) March 16, 2015 -- Logan Wiesman, now 5 years old, found out he had bumpy kidneys when he was just 2. He told his mom that his back was hurting, but he didn't know why. After several tests, they figured it out. His kidneys were already the size of adults' kidneys, and they were very, very "bumpy."
Logan and PKD
Logan has what is called Polycystic Kidney Disease, or PKD. In fact, he has a rare form called ARPKD, which occurs mostly in children.
PKD is actually one of the most common, life-threatening genetic diseases. More than 600,000 Americans and 12.5 million newborns, children and adults worldwide battle PKD every day. PKD affects more people than downs syndrome, cystic fibrosis, muscular dystrophy, hemophilia, and sickle cell anemia - combined.
The problem is, people can't see it, and therefore don't know about it! As Logan prepares to go into kindergarten, with his tummy bigger than most his age - he's decided he's not going to hide it. He wants people to know what he's dealing with here!
Logan Writes a Book
So Logan has teamed up with his Aunt Apie (April Cielica of Blue Ash Ohio) to write a book about his condition that he calls "Logan's Bumpy Kidneys." He talks about the fact that he has to drink lots of water, that his back often hurts, and that his kidneys will likely grow to the size of a football! He also admits that sometimes, he's afraid people will make fun of his tummy, and that's why he wants to tell his story. Not just for him, but for others who are also dealing with this same disease. April, who has taken a 2 year assignment in Romania for P&G, was delighted to do this with Logan from afar. "I decided to take my family on this grand adventure to Romania for two years, but I wanted to some how stay very close to Logan and his family. This book gave me just that opportunity. In fact, I feel I'm doing even more to help him get his story out now than ever before."
Where Can You Find Logan's Book?
Logan's Book is available for the Kindle, for iBooks and physically on Etsy, where you can find it by searching for "Logan" and "Bumpy."
You can also learn more about Logan and PKD by going to www.bumpykidneys.com
From New Orleans Saints
Saintsation Kriste was a guest speaker at the Polycystic Kidney Disease (PKD) Foundation’s Leadership Conference in Kansas City, Mo., from Feb. 20-22. There were more than 100 people in attendance; two representatives from each state and some representatives from Canada. Attendees were chapter coordinators and leaders across the country with goals of updating each other on ongoing kidney research and continuing to raise awareness of PKD.
Kriste wants people to know that kidney disease kills more than 90,000 Americans per year, which is more than prostate cancer and breast cancer combined. Kriste, 41, has been diagnosed with PKD for 15 years. After having PKD for 10 years, she believed she was guilty of not spreading awareness of the disease when she still had friends that did not know she was living with PKD. After talking to fellow Saintsations, one of the other Saintsations learned that her grandmother was diagnosed with PKD. Starting the conversation and spreading awareness of the disease are what matter most to Kriste during her involvement with the PKD Foundation.
“It was my first time speaking at anything like that and I was nervous. I spoke for about 30 minutes and told my personal story,” Kriste said. “Once my mom had the disease and had the kidney transplant, that’s when I changed the way I live. I now drink two liters of water per day and it has been shown that drinking a lot of water actually helps.”
Kriste was asked at the leadership conference to emcee during the National Convention in June 2016 in Orlando where there will also be patients, doctors and people looking to help spread awareness about PKD. She has been participating in the PKD Foundation’s 31 Days of PKD Challenges in honor of March’s National Kidney Month. Today Kriste plans to complete the sign “I’m taking the PKD Challenge for _____” and take a selfie with her two sons before posting it on social media. [Read more]
Gift of Life
From the Tallahassee Democrat, by Jim Henry blog
Friendship leads to kidney transplant
They didn’t know each other from Adam 15 years ago.
Yet a friendship that took hold on the softball field – one was an outfielder, the other an infielder – quickly strengthened over time.
They saw similarities in each other. Were inspired by each other. Their families got to know each other.
However, they were also very different.
The outfielder was healthy
The infielder was not, suffering from an inherited kidney disease that would eventually ravage his body.
After two years of discussions, testing and reflection – not to mention convincing the infielder this was absolutely the right thing to do – the outfielder made an ultimate sacrifice last August at Shands Hospital in Gainesville.
Mark Meleney donated his left kidney to Nathan Trevor Flanagan.
“There were so just so many reasons why it made sense in the end,” said Meleney, 54, Director of Visitor Services and Assistant Director in the Office of Admissions at Florida State.
“I watched Trevor as a person, how he lived his life over time as a care giver. He’s an amazing guy.”
Of course, Flanagan, 46, feels the same way about Meleney.
They are teammates and seven-month blood brothers celebrating this national kidney month with gusto.
One in three Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure, according to the National Kidney Foundation. [Read more]
You might not see them, but he's going to tell the world about it...and he's choosing March, National Kidney Month, to get started.
Cincinnati, OH (MMD Newswire) March 16, 2015 -- Logan Wiesman, now 5 years old, found out he had bumpy kidneys when he was just 2. He told his mom that his back was hurting, but he didn't know why. After several tests, they figured it out. His kidneys were already the size of adults' kidneys, and they were very, very "bumpy."
Logan and PKD
Logan has what is called Polycystic Kidney Disease, or PKD. In fact, he has a rare form called ARPKD, which occurs mostly in children.
PKD is actually one of the most common, life-threatening genetic diseases. More than 600,000 Americans and 12.5 million newborns, children and adults worldwide battle PKD every day. PKD affects more people than downs syndrome, cystic fibrosis, muscular dystrophy, hemophilia, and sickle cell anemia - combined.
The problem is, people can't see it, and therefore don't know about it! As Logan prepares to go into kindergarten, with his tummy bigger than most his age - he's decided he's not going to hide it. He wants people to know what he's dealing with here!
Logan Writes a Book
So Logan has teamed up with his Aunt Apie (April Cielica of Blue Ash Ohio) to write a book about his condition that he calls "Logan's Bumpy Kidneys." He talks about the fact that he has to drink lots of water, that his back often hurts, and that his kidneys will likely grow to the size of a football! He also admits that sometimes, he's afraid people will make fun of his tummy, and that's why he wants to tell his story. Not just for him, but for others who are also dealing with this same disease. April, who has taken a 2 year assignment in Romania for P&G, was delighted to do this with Logan from afar. "I decided to take my family on this grand adventure to Romania for two years, but I wanted to some how stay very close to Logan and his family. This book gave me just that opportunity. In fact, I feel I'm doing even more to help him get his story out now than ever before."
Where Can You Find Logan's Book?
Logan's Book is available for the Kindle, for iBooks and physically on Etsy, where you can find it by searching for "Logan" and "Bumpy."
You can also learn more about Logan and PKD by going to www.bumpykidneys.com
From New Orleans Saints
Saintsation Kriste spoke at Polycystic Kidney Disease Foundation's Leadership Conference
Kriste wants people to know that kidney disease kills more than 90,000 Americans per year, which is more than prostate cancer and breast cancer combined. Kriste, 41, has been diagnosed with PKD for 15 years. After having PKD for 10 years, she believed she was guilty of not spreading awareness of the disease when she still had friends that did not know she was living with PKD. After talking to fellow Saintsations, one of the other Saintsations learned that her grandmother was diagnosed with PKD. Starting the conversation and spreading awareness of the disease are what matter most to Kriste during her involvement with the PKD Foundation.
“It was my first time speaking at anything like that and I was nervous. I spoke for about 30 minutes and told my personal story,” Kriste said. “Once my mom had the disease and had the kidney transplant, that’s when I changed the way I live. I now drink two liters of water per day and it has been shown that drinking a lot of water actually helps.”
Kriste was asked at the leadership conference to emcee during the National Convention in June 2016 in Orlando where there will also be patients, doctors and people looking to help spread awareness about PKD. She has been participating in the PKD Foundation’s 31 Days of PKD Challenges in honor of March’s National Kidney Month. Today Kriste plans to complete the sign “I’m taking the PKD Challenge for _____” and take a selfie with her two sons before posting it on social media. [Read more]
Gift of Life
From the Tallahassee Democrat, by Jim Henry blog
They didn’t know each other from Adam 15 years ago.
Yet a friendship that took hold on the softball field – one was an outfielder, the other an infielder – quickly strengthened over time.
They saw similarities in each other. Were inspired by each other. Their families got to know each other.
However, they were also very different.
The outfielder was healthy
The infielder was not, suffering from an inherited kidney disease that would eventually ravage his body.
After two years of discussions, testing and reflection – not to mention convincing the infielder this was absolutely the right thing to do – the outfielder made an ultimate sacrifice last August at Shands Hospital in Gainesville.
Mark Meleney donated his left kidney to Nathan Trevor Flanagan.
“There were so just so many reasons why it made sense in the end,” said Meleney, 54, Director of Visitor Services and Assistant Director in the Office of Admissions at Florida State.
“I watched Trevor as a person, how he lived his life over time as a care giver. He’s an amazing guy.”
Of course, Flanagan, 46, feels the same way about Meleney.
They are teammates and seven-month blood brothers celebrating this national kidney month with gusto.
One in three Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure, according to the National Kidney Foundation. [Read more]
PKD Research
From Phys.org
A team of researchers in the United Kingdom has found a way to redesign an artificial connection between an artery and vein, known as an Arterio-Venous Fistulae, which surgeons form in the arms of people with end-stage renal disease so that those patients can receive routine dialysis, filtering their blood and keeping them alive after their kidneys fail.
The new design, described in the journal Physics of Fluids, from AIP Publishing, may decrease the likelihood of blockages in Arterio-Venous Fistulae, which is a major complication of dialysis.
While the AVF would have to prove effective in clinical trials before they could be deemed a success, the researchers are enthusiastic about their approach, which used software from the aerospace industry to design the novel configurations.
"At the moment, the process of creating an Arterio-Venous Fistulae for dialysis is rather 'one-size-fits-all'," said Peter Vincent, a senior lecturer and EPSRC early career fellow in the Department of Aeronautics at Imperial College London. "Our ultimate aim is to use computational simulation tools to design tailored, patient-specific Arterio-Venous Fistulae configurations that won't block and fail." [Read more]
From the Economic Times
MELBOURNE: A new stem cell therapy discovered by Australian researchers could help patients with chronic kidney disease to avoid dialysis or kidney transplants.
A research led by scientists of the Monash University has for the first time shown the effectiveness of combining a stem cell-based therapy with an anti-scarring agent which would reverse scarring and markers of kidney injury, thereby reducing the need for dialysis or transplantation.
The researchers discovered that .. [Read more]
Over 5 mn will undergo dialysis, kidney transplant by 2030: Study
The number of people receiving treatment for advanced kidney failure – such as dialysis or kidney transplant – will double to over five million by 2030, mostly in developing regions such as Asia and Africa, a study said, reports IANS.
Renal replacement therapy (RRT), through either dialysis or renal transplantation, is a lifesaving yet high-cost treatment for people with end-stage kidney disease. According to the latest research published in the UK-based The Lancet by the George Institute for Global Health, the number of people receiving RRT is projected to grow from 2.618 million in 2010 to 5.439 million by 2030.
“However, the number of people without access to RRT will remain substantial,” the study titled ‘Worldwide access to treatment for end-stage kidney disease: a systematic review’, said.
The largest absolute growth in the number of people receiving RRT is projected to rise from 0.968 million people in 2010 to 2.162 million by 2030 in Asia. The number of people receiving RRT is also forecast to increase rapidly in Africa, from 0.083 million in 2010 to 0.236 million by 2030, and in Latin America and the Caribbean, increasing almost 2.5 times from 0.373 million in 2010 to 0.903 million by 2030.
The review said about 2.618 million people received this life-sustaining treatment worldwide in 2010. However, it noted “at best, only half or less of all people needing RRT worldwide had access to it in 2010, meaning at least 2.284 million people might have died prematurely because they did not have access to the treatment in 2010″.
Most of this burden of preventable deaths fell on low income and middle income countries like India, China, Indonesia, Pakistan and Nigeria. This data show a pressing need to develop low-cost RRT alternatives to reduce disparities in access to the treatment, and the importance of development, implementation, and assessment of cost-effective end-stage kidney disease prevention strategies.
UMN Researcher Honored for Polycystic Kidney Disease Work
Peter Igarashi, M.D., is one of two recipients of the Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease (PKD). The award is a partnership between the PKD Foundation and International Society of Nephrology (ISN). It recognizes a medical professional or researcher exhibiting excellence and leadership in PKD research and whose work demonstrates tangible achievement toward improving knowledge and treatment of PKD. Igarashi is the head of the Department of Medicine at the University of Minnesota School of Medicine.
“This is a well-deserved honor for Dr. Igarashi, who exemplifies what it means to be a physician-scientist,” said Brooks Jackson, M.D., M.B.A., dean of the medical school.
The PKD Foundation and ISN established the award in 2002 through the generosity of Thomas Kaplan, in memory of his mother, Lillian Jean Kaplan, who had PKD and died in 2002. The award is to stimulate members of the global scientific and medical communities to increase or begin research leading to a PKD treatment and cure, generate momentum in the PKD field and produce positive public awareness about PKD. The awards presentation took place at the ISN World Congress of Nephrology in Cape Town on March 15.
Igarashi is the Nesbitt Chair and Head of the Department of Medicine at the University of Minnesota Medical School. He previously served as Chief of the Nephrology Division at the University of Texas Southwestern Medical Center where much of his work on PKD was conducted.
Igarashi has 30 years of research experience in kidney development, stem cells and PKD. His laboratory has identified new proteins that control genes and characterized their roles in cystic kidney disease. In addition, Igarashi has studied the role of the primary cilium in the progression of PKD. His group demonstrated that inactivation of a gene needed for the production of the primary cilium causes polycystic kidneys. Recent studies from his laboratory have revealed that non-protein coding genes play a role in PKD and represent potential therapeutic targets.
A research led by scientists of the Monash University has for the first time shown the effectiveness of combining a stem cell-based therapy with an anti-scarring agent which would reverse scarring and markers of kidney injury, thereby reducing the need for dialysis or transplantation.
The researchers discovered that .. [Read more]
From Free Press Journal, London
The number of people receiving treatment for advanced kidney failure – such as dialysis or kidney transplant – will double to over five million by 2030, mostly in developing regions such as Asia and Africa, a study said, reports IANS.
Renal replacement therapy (RRT), through either dialysis or renal transplantation, is a lifesaving yet high-cost treatment for people with end-stage kidney disease. According to the latest research published in the UK-based The Lancet by the George Institute for Global Health, the number of people receiving RRT is projected to grow from 2.618 million in 2010 to 5.439 million by 2030.
“However, the number of people without access to RRT will remain substantial,” the study titled ‘Worldwide access to treatment for end-stage kidney disease: a systematic review’, said.
The largest absolute growth in the number of people receiving RRT is projected to rise from 0.968 million people in 2010 to 2.162 million by 2030 in Asia. The number of people receiving RRT is also forecast to increase rapidly in Africa, from 0.083 million in 2010 to 0.236 million by 2030, and in Latin America and the Caribbean, increasing almost 2.5 times from 0.373 million in 2010 to 0.903 million by 2030.
The review said about 2.618 million people received this life-sustaining treatment worldwide in 2010. However, it noted “at best, only half or less of all people needing RRT worldwide had access to it in 2010, meaning at least 2.284 million people might have died prematurely because they did not have access to the treatment in 2010″.
Most of this burden of preventable deaths fell on low income and middle income countries like India, China, Indonesia, Pakistan and Nigeria. This data show a pressing need to develop low-cost RRT alternatives to reduce disparities in access to the treatment, and the importance of development, implementation, and assessment of cost-effective end-stage kidney disease prevention strategies.
From University of Minnesota, News Release
“This is a well-deserved honor for Dr. Igarashi, who exemplifies what it means to be a physician-scientist,” said Brooks Jackson, M.D., M.B.A., dean of the medical school.
The PKD Foundation and ISN established the award in 2002 through the generosity of Thomas Kaplan, in memory of his mother, Lillian Jean Kaplan, who had PKD and died in 2002. The award is to stimulate members of the global scientific and medical communities to increase or begin research leading to a PKD treatment and cure, generate momentum in the PKD field and produce positive public awareness about PKD. The awards presentation took place at the ISN World Congress of Nephrology in Cape Town on March 15.
Igarashi is the Nesbitt Chair and Head of the Department of Medicine at the University of Minnesota Medical School. He previously served as Chief of the Nephrology Division at the University of Texas Southwestern Medical Center where much of his work on PKD was conducted.
Igarashi has 30 years of research experience in kidney development, stem cells and PKD. His laboratory has identified new proteins that control genes and characterized their roles in cystic kidney disease. In addition, Igarashi has studied the role of the primary cilium in the progression of PKD. His group demonstrated that inactivation of a gene needed for the production of the primary cilium causes polycystic kidneys. Recent studies from his laboratory have revealed that non-protein coding genes play a role in PKD and represent potential therapeutic targets.
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