Development of a surgically implantable, artificial kidney—a promising alternative to kidney transplantation or dialysis for people with end-stage kidney disease—has received a $6 million boost, thanks to a new grant from the National Institute of Biomedical Imaging and Bioengineering (NIBIB), one of the National Institutes of Health, to researchers led by UC San Francisco bioengineer Shuvo Roy, PhD, and Vanderbilt University nephrologist William Fissell, MD.
"We aim to conduct clinical trials on an implantable, engineered organ in this decade, and we are coordinating our efforts with both the NIH and the U.S. Food and Drug Administration," Roy said.
Roy is a professor in the Department of Bioengineering and Therapeutic Sciences in the Schools of Pharmacy and Medicine, and technical director of The Kidney Project at UCSF, a multi-institutional collaboration. The Kidney Project team has prototyped and begun testing key components of the coffee-cup-sized device, which mimics functions of the human kidney.
Roy and Fissell will present updates on development of the device November 3-8 at Kidney Week 2015 in San Diego, part of a major meeting of the American Society of Nephrology.
NIBIB is overseeing and funding the continuation of their work for four years under a cooperative agreement through its Quantum Program, created to support the development of "biomedical technologies that will result in a profound paradigm shift in prevention, detection, diagnosis, and/or treatment of a major disease or national public health problem." This is the second major grant the researchers have received through the program.
In part because the U.S. population has grown older and heavier and is more likely to develop high blood pressure and diabetes, conditions often associated with kidney failure, the number of individuals diagnosed with kidney failure is growing year-over-year and has risen 57 percent since 2000, according to the National Kidney Foundation. More than 615,000 people now are being treated for kidney failure. U.S. government statistics indicate that kidney failure costs the U.S. healthcare system $40 billion annually and accounts for more than six percent of Medicare spending.
The waiting list for kidney transplants in the United States has grown to more than 100,000 people. The number of available kidneys has remained stagnant for the past decade, and only about one in five now on the list is expected to receive a transplant.
More than 430,000 of those with kidney failure now undergo dialysis, which is more costly and less effective than transplantation and typically requires hours-long stays at a clinic, three times weekly. Only about one in three patients who begins dialysis survives longer than five years, in comparison to more than four in five transplant recipients.
Fissell, associate professor in the Department of Medicine at Vanderbilt and medical director for The Kidney Project, said, "This project is about creating a permanent solution to the scarcity problem in organ transplantation. We are increasing the options for people with chronic kidney disease who would otherwise be forced onto dialysis."
Along with Roy at UCSF and Fissell at Vanderbilt, a national team of scientists and engineers at universities and small businesses are working toward making the implantable artificial kidney available to patients.
According to B. Joseph Guglielmo, PharmD, dean of the UCSF School of Pharmacy, "The grant from NIBIB is a striking affirmation of the promise associated with this device, as well as NIH confidence in the ultimate success of The Kidney Project. Patients with chronic kidney failure are in real need of alternatives to transplant and dialysis; this School of Pharmacy and campus priority clearly demonstrates the research rewards of working collaboratively."
In September the project was designated for inclusion in the FDA's new Expedited Access Pathway program to speed development, evaluation, and review of medical devices that meet major unmet needs in fighting life-threatening or irreversibly debilitating diseases. The program evolved from an earlier FDA program called Innovation Pathway 2.0, in which The Kidney Project team was one of three device-development groups selected for a pilot initiative focused on kidney failure. Members of the FDA regulatory staff have continually been in communication with Roy and other project leaders to help guide device testing and criteria for data collection.
The aim of the new program is to speed the FDA's premarket approval (PMA) process for scientific and regulatory review of safety and effectiveness of Class III medical devices—those with the potential to provide major benefits, but that also might potentially pose major risks.
"The new program brings FDA reviewers, scientists, and leadership together with our team to define a roadmap to regulatory approval and product launch," Roy said.
Early Studies of Artificial Kidney Prototype Are Encouraging
One component of the new artificial kidney is a silicon nanofilter to remove toxins, salts, some small molecules, and water from the blood. Roy's research team designed it based on manufacturing methods used in the production of semiconductor electronics and microelectromechanical systems (MEMS). The new silicon nanofilters offer several advantages—including more uniform pore size—over filters now used in dialysis machines, according to Roy. The silicon nanofilter is designed to function on blood pressure alone and without a pump or electrical power.
The second major component is a "bioreactor" that contains human kidney tubule cells embedded within microscopic scaffolding. These cells perform metabolic functions and reabsorb water from the filtrate to control blood volume. A project collaborator, H. David Humes, MD, professor in the Department of Internal Medicine at the University of Michigan, earlier showed that such a bioreactor, used in combination with ultrafiltration in an external device, greatly increased survival in comparison to dialysis alone in the treatment of patients with acute kidney failure in a hospital intensive care unit.
The artificial kidney being developed by Roy and Fissell is designed to be connected internally to the patient's blood supply and bladder and implanted near the patient's own kidneys, which are not removed.
Unlike human kidney transplant recipients, patients with the implantable artificial kidney will not require immunosuppressive therapy, according to Roy. Preliminary preclinical studies indicate that the non-reactive coatings developed for device components are unlikely to lead to filter clogging or immune reactions, he said, and that bioreactor cells can survive for at least 60 days under simulated physiological conditions.
About one-half of the new funding from NIBIB will support lab studies on methods for optimizing performance of the bioreactor's kidney cells. The remainder will enable refinements for the mechanical design of the nanofilter unit and biocompatibility of the artificial kidney. The filter will be evaluated in preclinical studies aimed at achieving clot-free operation and stable filtration for 30 days.
Private philanthropy and UCSF support already have been vital in sustaining The Kidney Project, and even with the FDA's new and more flexible pathway, additional funding will be required to meet project timelines, Roy said.
From Business Wire
Angion Biomedica to Present Clinical and Preclinical Data at the Upcoming American Society of Nephrology Conference in San Diego
UNIONDALE, N.Y.--(BUSINESS WIRE)--Angion Biomedica Corp. announced today that it will present Phase 2 data from one clinical program and three preclinical programs at the American Society of Nephrology Kidney Week, November 3-8, 2015 in San Diego, CA
... In addition, Angion will give presentations on two other compounds in its pipeline. Data on Angion’s novel anti-fibrotic compound ANG3070 in polycystic kidney disease will be presented in “Therapeutic Effects of the Fibrokinase Inhibitor ANG3070 in Polycystic Kidney Disease.” Angion’s novel compound ANG3586 for chronic kidney disease is the topic of “Identification of a New Aldosterone Synthase Inhibitor with Anti-Fibrotic Activity in Animal Models.” These compounds are Angion’s proprietary small molecules on track for IND submissions in 2016. [Read more]
Kadmon Corporation to Present Clinical Data on Tesevatinib for the Treatment of Polycystic Kidney Disease at ASN's Kidney Week 2015
Kadmon Corporation, LLC today announced data from an ongoing Phase 1b/2a clinical trial demonstrating the tolerability of tesevatinib, the Company's investigational oral tyrosine kinase inhibitor, in patients with autosomal dominant polycystic kidney disease (ADPKD). The data will be presented in a poster session (SA-PO865) at the American Society of Nephrology (ASN) Kidney Week 2015, being held November 3-8, 2015 in San Diego, CA.
ADPKD is an inherited disorder characterized by the formation of fluid-filled renal cysts, leading to loss of kidney function and end-stage renal disease. Tesevatinib inhibits the molecular pathways central to the progression of ADPKD, namely EGFR and Src family kinases. In addition, tesevatinib accumulates in the kidneys, 15-fold greater than in blood, making it an excellent potential therapeutic product candidate for PKD.
The Phase 1b portion of the study demonstrated that tesevatinib was generally well tolerated at 50, 100 and 150 mg QD, with rash occurring in the 150 mg QD dose cohort. The Phase 2a portion of the study evaluated tesevatinib 150 mg administered twice or three times weekly. The tolerability of these intermittent dosing schedules was improved over 150 mg QD, but rash still occurred. In order to better characterize the safety profile of tesevatinib, an additional 20 patients dosed at 50 mg QD are being enrolled into the study.
"We believe that tesevatinib's accumulation in the kidneys and specific inhibition of EGFR and Src allow for lower dosage in ADPKD patients, making it potentially suitable for long-term use with reduced adverse events," said Mark S. Berger, M.D., Senior Vice President, Clinical Research at Kadmon. "Results from this ongoing study have indicated that tesevatinib 50 mg QD appears to be an optimal dose to treat ADPKD."
"Tesevatinib is ideally suited to treat ADPKD, a disease for which there are no FDA-approved therapies," said Harlan W. Waksal, M.D., President and CEO at Kadmon. "Since ADPKD is a chronic disease requiring lifelong treatment, we will confirm the safety profile of tesevatinib at the 50 mg QD dose before pursuing a potential registration study in this indication."
In addition to ADPKD, Kadmon is developing tesevatinib for the treatment of autosomal recessive PKD (ARPKD), a rare but more severe form of the disease affecting newborns. The Company plans to initiate a Phase 1b/2a clinical trial of tesevatinib in ARPKD in 2016.
"We aim to conduct clinical trials on an implantable, engineered organ in this decade, and we are coordinating our efforts with both the NIH and the U.S. Food and Drug Administration," Roy said.
Roy is a professor in the Department of Bioengineering and Therapeutic Sciences in the Schools of Pharmacy and Medicine, and technical director of The Kidney Project at UCSF, a multi-institutional collaboration. The Kidney Project team has prototyped and begun testing key components of the coffee-cup-sized device, which mimics functions of the human kidney.
Roy and Fissell will present updates on development of the device November 3-8 at Kidney Week 2015 in San Diego, part of a major meeting of the American Society of Nephrology.
NIBIB is overseeing and funding the continuation of their work for four years under a cooperative agreement through its Quantum Program, created to support the development of "biomedical technologies that will result in a profound paradigm shift in prevention, detection, diagnosis, and/or treatment of a major disease or national public health problem." This is the second major grant the researchers have received through the program.
In part because the U.S. population has grown older and heavier and is more likely to develop high blood pressure and diabetes, conditions often associated with kidney failure, the number of individuals diagnosed with kidney failure is growing year-over-year and has risen 57 percent since 2000, according to the National Kidney Foundation. More than 615,000 people now are being treated for kidney failure. U.S. government statistics indicate that kidney failure costs the U.S. healthcare system $40 billion annually and accounts for more than six percent of Medicare spending.
The waiting list for kidney transplants in the United States has grown to more than 100,000 people. The number of available kidneys has remained stagnant for the past decade, and only about one in five now on the list is expected to receive a transplant.
More than 430,000 of those with kidney failure now undergo dialysis, which is more costly and less effective than transplantation and typically requires hours-long stays at a clinic, three times weekly. Only about one in three patients who begins dialysis survives longer than five years, in comparison to more than four in five transplant recipients.
Fissell, associate professor in the Department of Medicine at Vanderbilt and medical director for The Kidney Project, said, "This project is about creating a permanent solution to the scarcity problem in organ transplantation. We are increasing the options for people with chronic kidney disease who would otherwise be forced onto dialysis."
Along with Roy at UCSF and Fissell at Vanderbilt, a national team of scientists and engineers at universities and small businesses are working toward making the implantable artificial kidney available to patients.
According to B. Joseph Guglielmo, PharmD, dean of the UCSF School of Pharmacy, "The grant from NIBIB is a striking affirmation of the promise associated with this device, as well as NIH confidence in the ultimate success of The Kidney Project. Patients with chronic kidney failure are in real need of alternatives to transplant and dialysis; this School of Pharmacy and campus priority clearly demonstrates the research rewards of working collaboratively."
In September the project was designated for inclusion in the FDA's new Expedited Access Pathway program to speed development, evaluation, and review of medical devices that meet major unmet needs in fighting life-threatening or irreversibly debilitating diseases. The program evolved from an earlier FDA program called Innovation Pathway 2.0, in which The Kidney Project team was one of three device-development groups selected for a pilot initiative focused on kidney failure. Members of the FDA regulatory staff have continually been in communication with Roy and other project leaders to help guide device testing and criteria for data collection.
The aim of the new program is to speed the FDA's premarket approval (PMA) process for scientific and regulatory review of safety and effectiveness of Class III medical devices—those with the potential to provide major benefits, but that also might potentially pose major risks.
"The new program brings FDA reviewers, scientists, and leadership together with our team to define a roadmap to regulatory approval and product launch," Roy said.
Early Studies of Artificial Kidney Prototype Are Encouraging
One component of the new artificial kidney is a silicon nanofilter to remove toxins, salts, some small molecules, and water from the blood. Roy's research team designed it based on manufacturing methods used in the production of semiconductor electronics and microelectromechanical systems (MEMS). The new silicon nanofilters offer several advantages—including more uniform pore size—over filters now used in dialysis machines, according to Roy. The silicon nanofilter is designed to function on blood pressure alone and without a pump or electrical power.
The second major component is a "bioreactor" that contains human kidney tubule cells embedded within microscopic scaffolding. These cells perform metabolic functions and reabsorb water from the filtrate to control blood volume. A project collaborator, H. David Humes, MD, professor in the Department of Internal Medicine at the University of Michigan, earlier showed that such a bioreactor, used in combination with ultrafiltration in an external device, greatly increased survival in comparison to dialysis alone in the treatment of patients with acute kidney failure in a hospital intensive care unit.
The artificial kidney being developed by Roy and Fissell is designed to be connected internally to the patient's blood supply and bladder and implanted near the patient's own kidneys, which are not removed.
Unlike human kidney transplant recipients, patients with the implantable artificial kidney will not require immunosuppressive therapy, according to Roy. Preliminary preclinical studies indicate that the non-reactive coatings developed for device components are unlikely to lead to filter clogging or immune reactions, he said, and that bioreactor cells can survive for at least 60 days under simulated physiological conditions.
About one-half of the new funding from NIBIB will support lab studies on methods for optimizing performance of the bioreactor's kidney cells. The remainder will enable refinements for the mechanical design of the nanofilter unit and biocompatibility of the artificial kidney. The filter will be evaluated in preclinical studies aimed at achieving clot-free operation and stable filtration for 30 days.
Private philanthropy and UCSF support already have been vital in sustaining The Kidney Project, and even with the FDA's new and more flexible pathway, additional funding will be required to meet project timelines, Roy said.
From Business Wire
Angion Biomedica to Present Clinical and Preclinical Data at the Upcoming American Society of Nephrology Conference in San Diego
... In addition, Angion will give presentations on two other compounds in its pipeline. Data on Angion’s novel anti-fibrotic compound ANG3070 in polycystic kidney disease will be presented in “Therapeutic Effects of the Fibrokinase Inhibitor ANG3070 in Polycystic Kidney Disease.” Angion’s novel compound ANG3586 for chronic kidney disease is the topic of “Identification of a New Aldosterone Synthase Inhibitor with Anti-Fibrotic Activity in Animal Models.” These compounds are Angion’s proprietary small molecules on track for IND submissions in 2016. [Read more]
From Market Wired
Kadmon Corporation, LLC today announced data from an ongoing Phase 1b/2a clinical trial demonstrating the tolerability of tesevatinib, the Company's investigational oral tyrosine kinase inhibitor, in patients with autosomal dominant polycystic kidney disease (ADPKD). The data will be presented in a poster session (SA-PO865) at the American Society of Nephrology (ASN) Kidney Week 2015, being held November 3-8, 2015 in San Diego, CA.
ADPKD is an inherited disorder characterized by the formation of fluid-filled renal cysts, leading to loss of kidney function and end-stage renal disease. Tesevatinib inhibits the molecular pathways central to the progression of ADPKD, namely EGFR and Src family kinases. In addition, tesevatinib accumulates in the kidneys, 15-fold greater than in blood, making it an excellent potential therapeutic product candidate for PKD.
The Phase 1b portion of the study demonstrated that tesevatinib was generally well tolerated at 50, 100 and 150 mg QD, with rash occurring in the 150 mg QD dose cohort. The Phase 2a portion of the study evaluated tesevatinib 150 mg administered twice or three times weekly. The tolerability of these intermittent dosing schedules was improved over 150 mg QD, but rash still occurred. In order to better characterize the safety profile of tesevatinib, an additional 20 patients dosed at 50 mg QD are being enrolled into the study.
"We believe that tesevatinib's accumulation in the kidneys and specific inhibition of EGFR and Src allow for lower dosage in ADPKD patients, making it potentially suitable for long-term use with reduced adverse events," said Mark S. Berger, M.D., Senior Vice President, Clinical Research at Kadmon. "Results from this ongoing study have indicated that tesevatinib 50 mg QD appears to be an optimal dose to treat ADPKD."
"Tesevatinib is ideally suited to treat ADPKD, a disease for which there are no FDA-approved therapies," said Harlan W. Waksal, M.D., President and CEO at Kadmon. "Since ADPKD is a chronic disease requiring lifelong treatment, we will confirm the safety profile of tesevatinib at the 50 mg QD dose before pursuing a potential registration study in this indication."
In addition to ADPKD, Kadmon is developing tesevatinib for the treatment of autosomal recessive PKD (ARPKD), a rare but more severe form of the disease affecting newborns. The Company plans to initiate a Phase 1b/2a clinical trial of tesevatinib in ARPKD in 2016.
Living with PKD
From Bel Marra Health, by Mohan Garikiparithi
Polycystic kidney disease can cause renal failure, hematuria and kidney stones. Polycystic kidney disease is an inherited disorder where clusters of cysts develop within the kidneys. These cysts are noncancerous and are small sacs of fluid. Their size can vary as they accumulate more fluid, which allows them to grow quite large.
Polycystic kidney disease doesn’t solely affect the kidneys, it can also affect the liver and other parts of the body as well. Although noncancerous, the disease can still lead to other complications, including hematuria and kidney stones.
Hematuria – or blood in the urine – is a common complication of polycystic kidney disease – it occurs in 30 to 35 percent of patients. Hematuria is associated with an increased kidney size and a faster kidney growth rate. Hematuria is commonly caused by bleeding into a cyst that communicates with the urinary tract and bladder. This can occur during strenuous activity and can result in pain. Hematuria can be temporary, lasting up to seven days, and can be resolved with bed rest and staying hydrated. If bleeding does not stop, a procedure may be required to stop it.
Kidney stones, on the other hand, occur within 25 percent of polycystic kidney disease patients. Kidney stones can be quite painful and block urine flow. If blockage is not relieved, kidney function can become lost.
Polycystic kidney disease causes
Polycystic kidney disease is inherited (genetic) so the primary cause is a genetic defect that often runs in families. There are two different types of polycystic kidney disease based on different defects: autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).
ADPKD develops commonly in those in their 30s or 40s but children can develop it as well. For a child to develop ADPKD only one parent needs to have the genetic defect. ADKPD accounts for 90 percent of polycystic kidney disease causes.
ARPKD is a far less common type of polycystic kidney disease and the symptoms are common right after birth. In this type, both parents must have the genetic defect in order to pass it on to their child.
Polycystic kidney disease symptoms
Symptoms of polycystic kidney disease include:
High blood pressure
Back or side pain
Headache
Increased size of abdomen
Hematuria – blood in urine
Frequent urination
Kidney stones
Kidney failure
Urinary tract or kidney infections
Polycystic kidney disease treatment
Treating polycystic kidney disease involves managing and treating the symptoms associated with it. By controlling the symptoms you can slow down progression and avoid complications associated with the disease. Here are some common methods of polycystic kidney disease treatment.
Controlling high blood pressure
Medications to control pain
Draining cysts
Using antibiotics to treat bladder or kidney infections
Drink plenty of fluids to drain blood in urine
Dialysis or a kidney transplant to improve kidney function
Treating liver cysts
Getting regularly screened for intracranial aneurysms if patient has history of aneurysms in the family
Polycystic kidney disease diet
Although there is no specific diet for polycystic kidney disease, there are still some important aspects of diet to keep in mind to help maintain kidney health as a whole. A polycystic kidney disease diet should include:
Low salt, sugar and fat
Minimal alcohol
Plenty of fruits and vegetables
Moderate amounts of protein
Lots of water and liquids (hydration is very important)
Aside from these diet tips, it’s also important to not smoke, use illegal drug and always remember to exercisefor overall good health.
A Kokomo man is fighting for his life while he waits desperately on the kidney transplant list.
Jeremy Williams spends eight hours a day on home dialysis. He's one of approximately 600,000 Americans who live with polycystic kidney disease.
Williams was first diagnosed in 2006 with the disease, which causes cysts to grow on his kidneys. The cysts take the organs over and shut them down.
The disease runs in Williams' family. His uncle and grandfather both had it. They both died in their early 40s.
At 39 years old, Williams' kidney function is at just 7 percent of normal.
"I figured in my 40s I'd be done for, so, you know, it wasn't a good feeling to have," Williams said. "I'm past that now and I believe that I can make it and I can beat this."
The Williamses are worried they don't have 3-4 years to wait on the cadaver transplant list. Williams' best chance to beat the disease is to get a donation from a living donor. That's the only thing Ashton Williams wished for on his 12th birthday.
"He always feels really horrible," Ashton said. "He says he doesn't feel good every day, I guess, and I hope … I hope every day he gets better."
For more information about organ transplants and how to become a donor, click here . The Williams family also operates a Facebook page to spread the word about his situation. Find that page here .
From Bel Marra Health, by Mohan Garikiparithi
Polycystic kidney disease can cause renal failure, hematuria and kidney stones. Polycystic kidney disease is an inherited disorder where clusters of cysts develop within the kidneys. These cysts are noncancerous and are small sacs of fluid. Their size can vary as they accumulate more fluid, which allows them to grow quite large.
Polycystic kidney disease doesn’t solely affect the kidneys, it can also affect the liver and other parts of the body as well. Although noncancerous, the disease can still lead to other complications, including hematuria and kidney stones.
Hematuria – or blood in the urine – is a common complication of polycystic kidney disease – it occurs in 30 to 35 percent of patients. Hematuria is associated with an increased kidney size and a faster kidney growth rate. Hematuria is commonly caused by bleeding into a cyst that communicates with the urinary tract and bladder. This can occur during strenuous activity and can result in pain. Hematuria can be temporary, lasting up to seven days, and can be resolved with bed rest and staying hydrated. If bleeding does not stop, a procedure may be required to stop it.
Kidney stones, on the other hand, occur within 25 percent of polycystic kidney disease patients. Kidney stones can be quite painful and block urine flow. If blockage is not relieved, kidney function can become lost.
Polycystic kidney disease causes
Polycystic kidney disease is inherited (genetic) so the primary cause is a genetic defect that often runs in families. There are two different types of polycystic kidney disease based on different defects: autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).
ADPKD develops commonly in those in their 30s or 40s but children can develop it as well. For a child to develop ADPKD only one parent needs to have the genetic defect. ADKPD accounts for 90 percent of polycystic kidney disease causes.
ARPKD is a far less common type of polycystic kidney disease and the symptoms are common right after birth. In this type, both parents must have the genetic defect in order to pass it on to their child.
Polycystic kidney disease symptoms
Symptoms of polycystic kidney disease include:
High blood pressure
Back or side pain
Headache
Increased size of abdomen
Hematuria – blood in urine
Frequent urination
Kidney stones
Kidney failure
Urinary tract or kidney infections
Polycystic kidney disease treatment
Treating polycystic kidney disease involves managing and treating the symptoms associated with it. By controlling the symptoms you can slow down progression and avoid complications associated with the disease. Here are some common methods of polycystic kidney disease treatment.
Controlling high blood pressure
Medications to control pain
Draining cysts
Using antibiotics to treat bladder or kidney infections
Drink plenty of fluids to drain blood in urine
Dialysis or a kidney transplant to improve kidney function
Treating liver cysts
Getting regularly screened for intracranial aneurysms if patient has history of aneurysms in the family
Polycystic kidney disease diet
Although there is no specific diet for polycystic kidney disease, there are still some important aspects of diet to keep in mind to help maintain kidney health as a whole. A polycystic kidney disease diet should include:
Low salt, sugar and fat
Minimal alcohol
Plenty of fruits and vegetables
Moderate amounts of protein
Lots of water and liquids (hydration is very important)
Aside from these diet tips, it’s also important to not smoke, use illegal drug and always remember to exercisefor overall good health.
A Kokomo man is fighting for his life while he waits desperately on the kidney transplant list.
Jeremy Williams spends eight hours a day on home dialysis. He's one of approximately 600,000 Americans who live with polycystic kidney disease.
Williams was first diagnosed in 2006 with the disease, which causes cysts to grow on his kidneys. The cysts take the organs over and shut them down.
The disease runs in Williams' family. His uncle and grandfather both had it. They both died in their early 40s.
At 39 years old, Williams' kidney function is at just 7 percent of normal.
"I figured in my 40s I'd be done for, so, you know, it wasn't a good feeling to have," Williams said. "I'm past that now and I believe that I can make it and I can beat this."
The Williamses are worried they don't have 3-4 years to wait on the cadaver transplant list. Williams' best chance to beat the disease is to get a donation from a living donor. That's the only thing Ashton Williams wished for on his 12th birthday.
"He always feels really horrible," Ashton said. "He says he doesn't feel good every day, I guess, and I hope … I hope every day he gets better."
For more information about organ transplants and how to become a donor, click here . The Williams family also operates a Facebook page to spread the word about his situation. Find that page here .
Gift of Life
From ABC Affiliate WHAM, Rochester, NY
Brian Boneberg, 40, has polycystic kidney disease. It's a genetic disease that has even taken the lives of his family members. "My mother had a transplant, my uncle had a transplant, my grandmother never made it to a transplant. One of my cousins passed away from it," said Brian.
Doctors say Brian's kidneys are the size of a football, when they should be the size of a fist. "You don't have to be a spouse. Anybody can donate a kidney and there are so many people who have been waiting years and years and he's very lucky," says Julie of her husband Brian.
"He doesn't have to do that, but unfortunately there are a lot of people who are out there waiting for a kidney."
According to the National Kidney Foundation, there are 123,000 Americans currently on a waiting list for a lifesaving organ transplant. Of those, more than 101,000 need a kidney, but only 17,000 people receive one each year. It's rare, but the couple ended up being a good match for an organ transplant.
They have two children, Kaylee, 20, and Zachary, 15, who say their parents are a perfect match in more than one way. "They still act like teenagers in love," says Kaylee. "They cuddle on the couch and hold hands. It's nice living in a household with parents who really love each other."
Kaylee and Zachary have created a GoFundMe page for their parents, as they will not be able work during surgery and for some time after. "To know how hard he works now with the kidney that he has, and the kidney he is going to get, and what he is going to be able to do when he has that kidney," says Zachary, "is going to be amazing."
The couple recently celebrated 19 years of marriage. Their surgery is scheduled for December 1.
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