From PKD Foundation of Canada
Register today for the 2014 Walk for PKD
The Walk for PKD signifies a united group, moving towards treatments and a cure for polycystic kidney disease (PKD), one of the most common life-threatening genetic diseases affecting thousands in Canada. You can make an impact on this devastating disease by joining a Walk in your community, or creating a virtual Walk page.
Registration is easy!
Visit endpkd.ca/walkforpkd to find a Walk near you! Choose whether you would like to participate as a team or register as an individual.
After registering online, you can take advantage of features like:
creating a personal fundraising page to track dollars raised
tools to email family, friends and colleagues
making your kickoff gift online
Why Walk?
The Walk for PKD is the PKD Foundation of Canada’s signature fundraising event, raising more than $524,000 since 2007. This has helped move us closer to finding treatments. The money also helps provide education and support services, both online and in local communities.
We’ve made great strides but need your help in keeping the momentum going. We know we can exceed the $173,000 raised last year by recruiting more participants and engaging every walker in fundraising. With your help, we can look forward to a time when no one will have to suffer the full effects of PKD. Sign up today and help us END PKD!
Even if you are unable to attend the Walk for PKD or don’t have an event in your area, you can still make an incredible impact in raising awareness and funds for critical PKD research! By making apersonal donation, your efforts will help strengthen the direct funding of the PKD Foundation of Canada’s mission to promote programs of research, advocacy, education, support and awareness in order to discover treatments and cure for PKD and improve the lives of all it affects!
Remember – every dollar raised brings us that much closer to the ultimate finish line: A cure for PKD!
If you have any questions regarding the 2014 Walk for PKD, please do not hesitate to contact us either by phone at 1-877-410-1741 or by email at endpkd@endpkd.ca.
PKD Advocacy
From PKD Foundation
Now more than ever, it is critical for patients to advocate on behalf of themselves, families, friends and colleagues with PKD. Share your voice and tell your elected officials how they can help fight PKD.
Getting Started
Find your member of Congress
See where your member of Congress stands on key PKD issues
Legislative Glossary
Outreach
Contact your member of Congress through Twitter
Materials
Key messages/talking points for PKD advocates
Additional materials that can be downloaded, printed and taken with you to your meeting
Tips
Tips for scheduling a meeting with a member of Congress
Tips for visiting a Congressional office
Living With PKD
Jeffrey S. Berns, MD: Hello. This is Jeffrey Berns, Editor-in-Chief of Medscape Nephrology. With me today is Dr. Stan Goldfarb, who has a special interest in water. I have asked him to join me to talk about water, in particular how much water we should be drinking.
There is a theory in the lay press that we should be drinking at least 6 or 8 glasses of water a day, so let us begin with that. Where did that advice come from?
Stanley Goldfarb, MD: It is hard to say where it came from. People have tried to trace its origins. More than anything else, it may relate to the fact that people actually do consume about 6-8 glasses of water per day, including water in their food and all the liquids they consume. That is based on studies[1] that have been carried out by the National Academy of Sciences.
The issue is that the lay press has promoted the "urban myth" that not only should you drink 6-8 glasses of water a day as a typical intake, but in addition you should drink another 6 or 8 glasses a day in order to have some sort of improvement in your health. For that, there is virtually no basis at all.
Dr. Berns: Is it harmful, do you think?
Dr. Goldfarb: It is not harmful unless, of course, you drink it more rapidly than your renal excretory capacity. The excretory capacity is something on the order of 15-20 L over 24 hours as long as it is consumed at that rate. But if a person consumes several liters during a brief period of time, some have developed acute hyponatremia on that basis. So there is that risk, but it is a minor risk. The bigger issue is that it is expensive to drink bottled water, and the bottles are additional items that fill up the dumps that blight the environment.
Dr. Berns: So there is an environmental question, too.
Dr. Goldfarb: Absolutely.
Dr. Berns: Is there any physiologic reason to think that drinking more water than our thirst dictates may be beneficial?
Dr. Goldfarb: One hypothesis, primarily based on animal studies, is that animals that consume large amounts of fluid, usually stimulated by adding some sugar to the drinking water, have better outcomes in terms of experimental disease. A few studies have suggested this.[2] The explanation is that vasopressin is believed to be a culprit and somehow is producing alterations in the glomerular hemodynamics and perhaps also other effects. On the other hand, human studies have not shown similar findings.
A couple of human studies have suggested that individuals who drink very, very small amounts of fluid, significantly less than 800-900 mL/day, may be at higher risk for some cardiovascular diseases, perhaps bladder cancer, and strokes.[3] On the other hand, there is no evidence that people who consume normal amounts of water and have urine outputs of over 1 L/day are healthier when their outputs are 2-3 L/day. The most recent epidemiologic studies[4] that have been conducted have suggested that increased water intake is not associated with better cardiovascular outcomes or improved mortality.
Dr. Berns: Two patient populations come to mind that might benefit from a higher water intake: people who have a history of kidney stones and people who have polycystic kidney disease.
Dr. Goldfarb: Yes, absolutely. For people with kidney stones, certainly the evidence is incontrovertible. As a matter of fact, there was a literature review in Kidney International fairly recently, "The Medicinal Uses of Water in Renal Diseases,"[5] about water therapy, and most of the article is devoted to discussing the multiple studies that show the benefits of increasing water intake above 2 L/day for people with recurrent stone disease. It is quite clear that it is beneficial in that group.
With polycystic kidney disease, there is the observation that using vasopressin antagonists may reduce the cyst growth. As you know, studies have suggested that there may be some side effects that make the medications less useful. The logic was, if we can block cyst growth with vasopressin antagonists, perhaps high water intake will suppress vasopressin physiologically, and it would be beneficial in that way.
Some studies have shown that, depending on the level of kidney function, anywhere from perhaps 3 to as high as 4 or 5 L of water intake a day can keep the vasopressin levels relatively low and get urine osmolality to the same level as plasma osmolality. It is pretty hard to get it below plasma osmolality. But there is no evidence yet that that kind of strategy will actually reduce the growth of cysts.
Dr. Berns: Is your advice to our patients and to ourselves to drink as thirst dictates?
Dr. Goldfarb: I think you should drink when you are thirsty. I should point out that the one retrospective study of high fluid intake in people with kidney disease that came out regarding nondiabetic renal disease showed fairly impressively that individuals who had the highest urine output actually had the most rapid deterioration of renal function.[6] That study has been criticized because the study population may have had more kidney disease, and that is why they had less concentrating ability. However, the group of patients with the highest urine output also had the lowest serum sodium, suggesting that, in fact, they were driving the high urine output with a high fluid intake.
I believe the advice nephrologists should give patients with chronic kidney disease is that other than in certain circumstances -- foreign bodies in the urinary tract such as calculi and so on -- patients should not push a high fluid intake. There is no evidence that it is beneficial, and there may be some evidence that it's harmful.
Dr. Berns: And, finally, tap water vs bottled water.
Dr. Goldfarb: Tap water is a lot cheaper. Water is tested several times a day by most water departments. And I do not believe there is any rationale other than being a victim of really effective marketing techniques to drink bottled water. [Read more]
PKD Research
From Digital Journal, Press Release
Kadmon Corporation, LLC today announced the initiation of the Phase 2a portion of a Phase 1b/2a study of KD020, the Company's orally bioavailable small molecule kinase inhibitor of Src, HER2, EGFR and VEGFR2/KDR, in autosomal dominant polycystic kidney disease (ADPKD). Initiation of the Phase 2a portion of the study follows the unanimous recommendation of the study's Data Safety Committee after their review of all Phase 1b safety and pharmacokinetics data.
ADPKD is the most prevalent monogenic disease in the US and globally, affecting about 600,000 Americans1 and about 12.5 million people worldwide,2,3 with no disease modifying approved therapies currently available. ADPKD is caused by a mutation in either the polycystin 1 or 2 (PKD1 or PKD2) genes, resulting in the abnormal, uncontrolled growth of renal tubular epithelial cells. The disease is characterized by the formation of cysts in the kidney causing destruction of the kidney parenchyma resulting in loss of renal function. PKD is the fourth highest cause of kidney failure.4 Clinical symptoms usually develop between the ages of 30 and 40, but they can begin earlier and include persistent flank pain, hypertension, kidney and urinary tract infections and hematuria. Hypertension is particularly common with ADPKD and develops in many patients by age 20 to 30.4 The average lifespan of ADPKD patients in the US is 64 years, which is more than 10 years less than the average overall average lifespan in the US. The Phase 2a portion of the study is expected to enroll approximately 25 patients, with primary outcome measures of total kidney volume and glomerular filtration rate.
In the Phase 1b portion of the study, KD020 was generally well tolerated, with rash (Grade 2) as the most common > Grade 1 adverse event in the highest dose cohort (150 mg daily). The Phase 2a study is designed to evaluate the activity, safety and tolerability of an alternate dosing schedule of 150 mg of KD020 administered three times weekly.
"Autosomal dominant PKD is one of the most common life-threatening genetic diseases, frequently leading to end stage kidney disease requiring dialysis or transplant as early as the fourth decade of life," said Samuel D. Waksal, Ph.D., Chairman and CEO of Kadmon. "Unlike currently used therapies, which address symptoms but do not delay onset to kidney failure, KD020 is designed to inhibit the molecular pathways central to progression of the disease itself, namely EGFR, Src and VEGFR. We are encouraged by the initial tolerability profile of KD020, and look forward to understanding its broader potential in addressing ADPKD through the Phase 2a portion of the study." [Read more]
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