The 2011 Walk for PKD, or polycystic kidney disease, is set for Saturday, Sept. 24 at 10 a.m., with registration starting at 9. The walk takes place rain or shine at Bedford Hills Memorial Park, 60 Haines Road.
Families and supporters from Westchester, Putnam, Orange, Ulster, Sullivan, Rockland and Dutchess counties will take part.
The walk increases awareness of PKD and raises funds for PKD research.
PKD is one of the most common, life-threatening genetic diseases – affecting 12.5 million people worldwide including 1600 in Westchester County alone. It causes cysts to form in the kidneys, interfering with the kidney’s ability to filter toxins out of the blood, resulting in eventual kidney failure. Dialysis and transplantation are the only treatments. There is no cure for PKD.
The Walk for PKD will help raise funds for medical research aimed at finding a treatment and cure for PKD. The nationwide effort is expected to raise more than $4.5 million. A cure for PKD would save lives, free up thousands of spots on the kidney transplant waiting list, and save billions of US tax dollars annually in dialysis-related expenses. Research has identified the genes causing PKD and clinical trials of potential treatments are underway…now is the time to bring attention and funding to PKD research.
This will be the fifth year that the The Karl Family of White Plains has participated in the Walk for PKD and they have raised almost $56,000 because of their efforts. Their son, Gabe, was diagnosed with ARPKD at birth in March 2006. Subsequently, their oldest son, Max, was also diagnosed.
TJ Sayah of Verbank was just 3 when his mother had a kidney transplant due to PKD. Now, at age 15, he has decided to do something about PKD by raising funds for a cure through the Walk for PKD. He has walked in 3 walks so far and raised over $2,000 for PKD research.
TJs father, Bob Sayah, is the captain of Team Teddy Bear. Bob hopes that significant advances can be made over the next few years so that the next generation (which could include his children) might have improved treatment options available to them – or even a cure. Bob has started a blog to track their team progress and discuss issues related to PKD.
Josephine DaCosta of Suffern was diagnosed with PKD in 2008 when during a routine physical it was determined that she only had 20 percent kidney function. Josie was a newlywed and her new husband began a Facebook campaign to try to find a potential donor. Her youngest sister turned out to be a perfect match and donated a kidney to Josie on Oct. 29, 2009. Josie considers the transplant to be only a “temporary cure”.
Heidi Grossman Cambareri of Somers is the coordinator of the Hudson Valley chapter of the PKD Foundation and is the fourth generation in her family to have PKD. Her father had a kidney transplant 15 years ago following four years on dialysis. Her younger sister also has PKD. Ten years ago there were no clinical trials for PKD patients. Now there are 22, and Heidi has been in one since September 2008. The Tempo ¾ trial involves a study drug called Tolvaptan, which will hopefully slow or stop the growth of kidney cysts in PKD patients.
For more information on PKD, visit the PKD Foundation web site at www.pkdcure.org.