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Monday, July 27, 2009

PKD-Polycystic Kidney Disease Walk and Awareness

This is off topic compared to my usual blog posts so I hope you forgive me for going in a different direction this time....

I wanted to bring attention to a disease that, before I met my husband, I never knew existed. After we had dated for a few months and I was introduced to his extended family I learned about the disease that afflicted his Uncle Johnny or "Uncle Bop" as he is lovingly called by close family and friends. (Apparently, Johnny was a very active kid who "bopped" around excitedly when he talked to others and the nickname stuck.) He's still a very active social guy who loves to have a good time, laughing and joking every chance he gets. He's been blessed by a successful organ transplant made possible by a talented team of surgeons and his very generous and caring sister, Maureen, or "Aunt Mo," who donated her kidney to save his life. Now Uncle Bop's daughter Renee, who is a dedicated nurse, wife and mother to 2 young boys is being afflicted by PKD and has also revealed to us that her youngest son has inherited the gene from her. Our hearts are breaking. The following is an email sent out by the brave and fearless Renee. If you care to donate to the fundraising efforts we would be extremely grateful. But, more importantly, since so many of us are in the dark about PKD despite the fact that it affects numerous people, I wanted to write about it here and hopefully create some awareness since it doesn't get the funding or publicity it needs. Please read Renee's email just below my signature for more details on the disease. Thanks so much for your time.

I am walking this October 25th in the TriState Walk for PKD (Polycystic Kidney Disease).

For those of you unfamiliar with the disease here are some facts and statistics:
-PKD is a life-threatening genetic disease that causes fluid filled cysts to grow in both kidneys. Overtime these cysts grow causing the kidneys to increase dramatically in size. They can grow to be the size of a football and weigh as much as 38 pounds each.
-There are many symptoms and these cysts can also be present on the liver, spleen or pancreas.
-More than 60% of people with PKD will develop kidney failure and require dialysis or a transplant to live.
-It comes in 2 hereditary forms: ADPKD-Autosomal Dominant PKD; and ARPKD-Autosomal Recessive PKD.
-Both forms affect 600,000 Americans and ADPKD affects 12,500,000 people worldwide. That is 1/500 people worldwide. Both forms equally affect men women and children regardless of age race, geography or ethnic origin. And it DOES NOT SKIP A GENERATION.
-ARPKD is a rare form of PKD and affects 1/20,000 babies worldwide. Tragically, most often these babies do not survive longer than 1 month of age.
-PKD affects more people than Down Syndrome, Cystic Fibrosis, Muscular Dystrophy and Sickle Cell Anemia combined. Yet government funding for these diseases remains significantly higher than the funding for PKD.
-PKD costs the government more than $2 billions per year in Medicare and Medicaid costs for dialysis, transplantation and related treatments... that cost is sure to be on the rise. Despite the staggering costs of treatments, in 2007 the NIH only provided $32 million for PKD research.
For those of you who know me, you know that my father was diagnosed with PKD at around age 40. He received a transplant form his sister-Maureen. I am glad to say that he is still doing well and his 22nd anniversary will be this August. Thank you Aunt Maureen-AKA Aunt Kidney.
I have inherited ADPKD from my father and I have developed severe cystic liver disease that will likely require a liver transplant. There is a 50% chance that you will pass the gene on to each child you have…unfortunately, my son Ian has inherited the disease from me.
Please help me raise money to raise awareness on this disease. But most importantly, help me raise money for research to find a cure for this disease so that no one will have to suffer the affects of PKD.

Thank you for your support--every penny counts, whether it is $1 or $100.

Renee :-)

Visit my personal page http://www.pkdcure.org/renee.reilly to join the walk with me, or to donate to the cause. My team is The Reilly Renals.
For other information on PKD visit

Please pass this on to any of your friends if you think they would like to participate.--Thank You again :-)



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