Crowdfunding Can Help

Kidney Transplant

From Long Island Now, Long Island, NY, By Tara Conry

Crowdfunding helps LI woman with high kidney transplant costs

In a video posted last week to YouTube, 8-year-old Shirley resident Karen Jackson and her brother, Cole, 5, can be seen making pleas on behalf of their grandma.

“Please help us get money, so my ‘Beba’ can get her kidney fixed,” says Cole, referring to his grandmother, Smithtown’s Claudia Bowers.

Bowers, 62, has been in renal failure since January 2013, and has been undergoing nine hours [Read more]

From Coventry Telegraph, United Kingdom, By Cara Simpson

Mum trying to save son's life by giving him a kidney is told she cannot stay in UK for transplant

Warwick University student who is seriously ill is desperate for mum's donation but Home Office wont extend her visa.

A desperate mum says she is being denied the chance to save her son's life because of a visa dispute.

Pulkit Maniktala, an international student at Warwick University, needs an urgent kidney transplant.

The 21-year-old Indian national is being treated at Coventry’s University Hospital for end-stage renal failure with dialysis three times a week.

His mother is a suitable donor but she is being denied an extension on her visa so she can undergo the life-saving operation.

The family claim they’ve been told the circumstances are not exceptional enough.

His mum Karuna Maniktala said: “This operation is our silver lining.

“Whenever he cried, I used to tell him that he’s being so brave, and to bear the pain for two or three months and then it will all be over. Now what can I tell him?”

Since being diagnosed with renal failure, Pulkit has juggled lectures and coursework with the demands of four-hour long dialysis sessions in hospital three times a week.

He hopes to study for a masters at Warwick once he has his degree.

Some 2,000 people touched by Pulkit’s plight have put their names to an online petition calling for the Home Office to have a change of heart. [Read more]

Legislation News

From Roll Call, Washington, DC, By LaVarne Burton, Lori Hartwell, Hrant Jamgochian and Bruce Skyer

Bipartisan Legislation Built With Quality Patient Care in Mind  Commentary

Although Americans might struggle to find consensus on many policy issues related to health care, when faced with a serious health issue we unite behind the common goal of helping those living with it. Policymakers, health officials and the public have thrown their muscle behind putting a stop to once-deadly childhood illnesses, harmful toxins, and other threats to our health and safety.

Now the kidney community is doing the same — standing together to improve the outlook for Americans with Chronic Kidney Disease and for those who have kidney failure. Our nation’s leading kidney patient advocacy groups are proud to support H.R. 4814 —The Chronic Kidney Disease Improvement in Research and Treatment Act of 2014.

CKD, a slow and often silent, progressive condition, damages the kidney’s ability to cleanse the body of waste products. More than 26 million Americans have CKD and another 1 in 3 is at risk. When CKD is not recognized and treated, it can progress to irreversible kidney failure, or End Stage Renal Disease. Kidney failure affects more than 615,000 Americans and is survivable only with a kidney transplant or life-sustaining dialysis treatments that cleanse the blood several times per week.

Increases in risk factors for CKD and ESRD — including high blood pressure, diabetes and obesity — have led to an increased urgency for new approaches in prevention and treatment. The Chronic Kidney Disease Improvement in Research and Treatment Act of 2014 addresses this problem from multiple angles and seeks to ensure that Americans living with kidney disease have access to the health care necessary to survive and thrive.

H.R. 4814 addresses gaps in critical research by requiring the Department of Health and Human Services to evaluate federal spending on kidney disease research compared to that on kidney disease treatment; improve coordination of Federal research efforts across agencies; and investigate the differences in disease progression and treatment patterns in minority populations which are disproportionately impacted by the disease. The bill also improves access to care for Medicare beneficiaries with CKD. It removes barriers to patients receiving the Medicare Kidney Disease Education program, which helps patients make informed decisions about dialysis options, including home dialysis, getting on the transplant waiting list, and steps to take towards identifying a living kidney donor. H.R. 4814 also provides incentives to nephrologists and other non-physician health professionals to practice in underserved rural and urban areas to improve access to care. [Read more]

PKD News

From CTV News, Montreal, Canada

Polycystic Kidney Disease Foundation of Canada Hosts "A Shoot for the End"

On Sunday, August 10th from 1:00 pm - 7:00 pm, it's your opportunity to take part in a photo shoot with a professional photographer. To help you look your best, a make-up artist and hairdresser will be on site along with some special accessories. There will also be a silent auction with a number of great prizes to be had. For additional information, please call 514-501-9924.

From PKD Foundation of Canada

The 2013 PKD Foundation of Canada Annual Report is Now Available

We are proud to share our 2013 Annual Report with you! None of the work – whether funding vital research, providing education and support to patients and their families, elevating the patients’ voice through advocacy, or raising awareness of polycystic kidney disease – could have happened without you. Take a look at what you have made possible and all that we have accomplished together by downloading the PKD Foundation of Canada’s 2013 Annual Report here.