Sunday, August 29, 2010

2010 Walk letter

Dear family and friends,

The 2010 Walk for PKD is coming up on Saturday, September 25th. This will be my fifth year leading our walk team, Team Teddy Bear, as we strive to raise funds and awareness in the fight against Polycystic Kidney Disease, otherwise known as PKD.

PKD is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. In fact, it affects more people than Down syndrome, cystic fibrosis, muscular dystrophy, and sickle cell anemia combined! Still, few people know about it.

As most of you are probably aware, my wife, Jeanne, had a transplant 12 years ago due to Polycystic Kidney Disease. With PKD, cysts grow on a person’s kidneys, inhibiting the kidney’s ability to do its job to remove toxins from the body. Over time, the kidneys will function less effectively and for most people with PKD, their kidneys ultimately fail them. For Jeanne, this happened at the young age of 31. Thankfully, we were blessed that Jeanne’s Aunt Susie was willing and able to donate a kidney to her. The successful transplant was performed on May 26, 1998.

While the miracle of a kidney transplant is a wonderful treatment, it sadly is not a cure for kidney failure. A transplanted kidney can only last a limited amount of time in a foreign body. The exact number of years can very significantly, but the expected time a successful transplant will last is generally about 10-15 years. In Jeanne’s case, she started her progression toward kidney failure about a year ago, and was placed on the waiting list for a new transplanted kidney last September 30th. More recently, in order to help treat a hernia problem that caused a recurring intestinal blockage, she had both of her native diseased kidneys surgically removed. And, just in the past month, Jeanne’s kidney function has decreased to the point that she has now begun receiving dialysis treatments three times a week in order to remove the toxins that her kidney can no longer filter out for her. You can read more about our search for a new kidney for Jeanne at

As in past years, I am leading up a team of walkers to attempt to raise money for the PKD Foundation that can be used to help find new treatments for PKD that will help future generations of people who are afflicted with this disease. I have set a team goal of $4000 to raise money to fund vital patient education and research into a treatment and a cure.
If you wish to help in the fight against PKD, you can make a secure donation online at or visit my team page at Whatever you can give will make an impact - no donation is too small! I truly appreciate your support. If you wish to donate, but do not wish to do so online, you may write out a check to the PKD Foundation and mail it to me at:

Bob Sayah
53 Cooper Drive
Verbank, NY 12585

and I will forward it along to the foundation.

Thank you for helping in the quest to find a cure for PKD! And thanks to all of you who have supported my family and I with your prayers and offers of help over the past year!



RuthWells said...

Bob, I'm so sorry to hear that Jeanne is awaiting another transplant. Her story points out very dramatically how the current treatments for PKD are simply not sufficient.

I will be walking again in the Philadelphia walk this year, and have a special project in the works. A dear friend who is a jeweler has designed a PKD awareness/fundraising necklace, proceeds from which will be donated to the PKD Foundation. I'm obviously trying to get as much visibility as I can for it, so if you're interested in sharing the links through your blog, let me know and I'll send you details.

Best of luck to you and your family.

Bob said...

Thanks for the kind thoughts. As you can probably tell, I haven't had much time for blogging of late, but if you send along the info on the jewelry, I'll be happy to add a post with the information!