Chris Ozyck is perhaps New Haven’s best known planter of new trees. On Saturday he was out planting seeds of a different sort —to help research sprout to treat PKD, a kidney disease with which he was recently diagnosed.
Those seeds, also green, took the form of dollars.
With a lot of courage on quiet display, the Connecticut Walk for PKD, polycystic kidney disease, attracted more than 150 people to Lighthouse Point Park Saturday morning. The event raised approximately $50,000 toward a national goal of $3 million, according to organizers.
The disease, which is hereditary, swells kidneys to abnormal size, among other effects, and diminishes function. Within a few years Ozyck will need dialysis and eventually kidney transplants. Currently no real treatment and no real cure exist, although promising clinical trials are underway.
Which costs money. The national goal for the PKD Foundation, according to the walk’s manager, Jennifer Egan, is $3 million.
The disease runs in families, with the children and or grandchildren of PKD bearers having a high likelihood of inheriting the DNA alteration that appears to cause it. Because the life-saving organ donor is often a sibling or other relative, PKD is very much a family affair.
As was Saturday’s event, with a picnic, music, face painting, and many activities for kids.
There were proclamations from Gov. M. Jodi Rell and West Haven Mayor John Picard, who noted that 12 million people have the disease worldwide, 600,000 in the U.S., some 7,000 in Connecticut.
“Because it’s a genetic disease, present in families, we’re truly focusing on creating a family event,” said Jaime Lazarus, one of the walk’s coordinators (in the photo with her mom Barbara).
In a moving ceremony under a drizzly sky, Lazarus, who herself was just diagnosed, called out: “How many are now on or have been on dialysis? Please come forward.”
As several people crossed the balloon-arched starting line for the walk, the balance of the festive crowd called out a stalwart refrain: “This is why we walk!”
Likewise: How many are on a waiting list for a kidney transplant?
“This is why we walk!”
Who has donated a kidney to a friend or a relative? Who has received a kidney transplant? Please, she said, step across the line.
Each time the group, growing more hushed, called out, “This is why we walk.”
Finally there was a moment of silence for the many who had died. Then the walkers took off around the park’s scenic lighthouse loop.
Some jogged, some strolled, some were being strolled, and many wore T‑shirts commemorating lost relatives.
Barbara Lazarus said PKD has been in her family for four generations. She has the disease. Her dad died of it, just when dialysis was being pioneered. His dad died before him. Both passed at age 45.
Click here for Chris Ozyck’s page on the PKD Foundation fundraising site for more details as to why he’s throwing himself into raising money for the cure.
Those with one form of PKD have a 50 percent chance of passing the DNA-related disease on to their children. Those with another form have children who typically don’t survive infancy.
In his can-do fashion, Saturday morning Ozyck said he he had volunteered to sell the teal and orange pinwheels at the pre-walk activities, one for two bucks and three for five, “because it’s a job that nobody else wanted.”
Ozyck has bigger plans. He’s part of the PKD national fund-raising team that is running in the Chicago Marathon next weekend to raise even more funds.
By the end of Saturday’s walk, he’d raised over $5,000. Saturday night 150 more people showed up at Christopher Martin’s. Another $2,300 was raised, Ozyck reported in an email.
Then he added; “I’m am really going into this because my daughters have a 50 percent chance of inheriting this [PKD]. As a father I don’t want to look back and wish I had done more.”
Because of that, he said he is resetting his goal to $10,000.
Click here for more info on how to help.