Saturday, November 20, 2010

Fall Soccer

Congratulations to the Wolves - Jason and Brian's soccer team - for winning the end of year Town of Washington soccer tournament!

A big thank you to Jeff for coaching the team!

And thanks to Janelle for passsing along the team picture.

Saturday, November 6, 2010

Team Photo 2010

Here is Team Teddy Bear's official team photo for 2010:

Thanks to the support of friends, family, and even friends of family, Team Teddy Bear (New York + Chicago) managed to collect over $5800 this year!

Our biggest walk team ever and our most money collected ever!

Thank you all so much!

Sunday, September 26, 2010

Walk Day 2010

Yesterday was the 2010 Hudson Valley Walk for PKD and it couldn't have been a more perfect day. The weather was beautiful and the event went very well. It's always a very special day, but I truly think this year was the best one yet!

Jeanne wasn't yet up to walking anywhere near the 2 1/2 miles the walk goes, but she did feel good enough to come along to the event. She helped out by sitting at the chapter information table. Considering where she was just a couple of weeks ago, this was quite an achievement.

Missed were Kirsten and Luke of "Luke's team" who have moved off to Massachusetts in the past year. Their team was always on of the top fundraising teams and Kirsten was always very involved in the chapter planning activities. Luke is a wonderful boy who received a transplant due to ARPKD a couple of years ago.

Missed also was Bennie Newman, Diane and Chuck's father, who unfortunately passed away earlier this year due to complications from PKD.

Michelle and her Three Peas in a Pod team are always fantastic fundraisers, but this year they outdid themselves, raising over $20,000!!!!! As usual, Michelle ran a fantastic raffle and silent auction as well. Her dedication to raising funds to fight this disease and her willingness to reach out and provide support to other parents of children with ARPKD is admirable and inspirational.

It was great to talk with Wayne Grossman, just a few weeks removed from surgery to repair a brain aneurysm, which I have just recently learned is another complication that can come along with PKD. He appears to be doing fantastic.

TJ won a couple of awards - one for top youth fundraiser and the other for most creative youth web page. On top of that, he used his amateur radio skills to lead the walk and help provide communications in case anyone needed to make a call for help.

Traci Sinapi also won an award for her web page. Reading about her mom reminds me a lot of how Jeanne has handled living with this disease.

Brain and Jason got some recognition for their fundraising as well. The highlight of the day for them was getting their faces painted. Jason was a tiger and Brian was a puppy dog.

It was great having my sister Cindy, my nephew Brandon and my nieces Freya and Diana join us at the walk for the first time this year. Along with the veteran Team Teddy Bear walkers, it gave us our biggest team ever!

But, the highlight of the event for me was a surprise visit from my Uncle Marty, Aunt Lyn and cousin Caty who drove in nearly three hours from Woodstock, Connecticut to walk with us!

Saturday, September 18, 2010

UCSF unveils model for implantable artificial kidney to replace dialysis

With Jeanne now on dialysis, I found this article especially interesting. If they can actually get something like this to work some day, it would be a huge benefit to those in end-stage renal failure.

Sunday, September 12, 2010

PKD Jewelry Fundraiser

Check out Ruth's Lemonade and Kidney's blog to see some nice pendant necklaces which are available to purchase. More than half of the proceeds from the sale of the necklaces will be donated to the PKD Foundation.

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!


Saturday, May 29, 2010

3rd Annual Hudson Valley Chapter Fundraiser Renegades game

The date for this year's Hudson Valley Chapter's fundraising event at the Hudson Valley Renegades is Sunday, August 1st. Gametime is 5:05PM. Cost is again $20, which gets you a ticket to the game, a Renegades cap, and a coupon for a hot dog and a soda. $8 of each ticket bought goes to the PKD Foundation. This year, the Renegades are offering to let us set up a information table if we can get 100 people to buy tickets in advance.

You can purchase tickets online at by entering the passcode hvpkd. For more details on the event and other ways to purchase tickets, see the flyer attached below (click on it to enlarge it). If you have any questions, you can contact me by email ( or give me a call at 845-444-0186.

Hope to see you at the game.