Bright and energetic, Cole plays a mean game of hockey -the 45-pounder was named rookie of the year on his Schenectady Mites team. He stays up late with this mom to watch their beloved Red Sox. And he likes to play with his protective older sister, Isabella, and their family dogs, Sir Chili and Honey.
He's a regular kid. But there's more: Cole is fighting a battle with X-linked Retinitis Pigmentosa (RP), a genetic disease that is steadily robbing him of his night and peripheral vision. Without a cure, doctors say, he will be completely blind in a matter of years.
Which is where the friends come in.
Shortly after Cole's diagnosis in 2004, the Nowak family decided to fight back against RP with fundraising. “This has given us some control over something that was controlling us,” Bill says.
Last summer, they inaugurated their main event, ColeRPalooza, a barbecue and blues festival, that raised $55,000 for Fight for Sight, an organization that funds research toward finding cures for blindness. The goal is to raise $100,000 per year, Bill says.
Much of their support has come from the Union community.
Bill, who played strong safety on Union's 1983 Stagg Bowl team, is a volunteer special teams coach for Union football. When word of Cole's diagnosis hit the team, the players rallied with bake sales and a Dodgeball tournament. They raised about $8,000.
Women's softball, coached by Bill's former teammate Peter Brown '86, held a car wash that raised about $500.
His father's football influence notwithstanding, Cole's real passion is Union hockey. Several times last season, the team brought Cole into the locker room for post-game meetings, where he would sit next to goalie Kris Mayotte and listen to Coach Nate Leaman's analysis.
This year, the team is planning fundraising events including a skills competition with Schenectady Youth Hockey, and sponsorship for every power play goal the Dutchmen score. “Bill is a very motivated person,”
Leaman says, “and it's hard not to jump on board.” Leaman also is encouraging his players from engineering to join Nowak's effort to develop technology-a puck that emits sound-so that visually impaired players like Cole can enjoy the sport. “I don't want his disability and lack of options to stop him from playing a game he is passionate about,” his father says.
Two of Bill's fraternity brothers at Beta Theta Pi have also supported the effort. Ralph Tortorella '85 was instrumental in fundraising for the inaugural ColeRPalooza. This year, he is joined by John Cooney '86, and their fundraising impact is sure to be felt.
RP is an inherited genetic disease that affects about 400,000 in the U.S. Symptoms, which range from minor loss of peripheral vision to blindness, usually first appear in childhood or early adolescence.
Time is not on Cole's side. “It may be too late for Cole,” his father says, “but there are a lot of kids out there who can benefit from our efforts.”
The family discusses Cole's future, and they keep a list of things for him to do and see before his sight worsens. He is learning Braille.
Bill and Donna, who met at Albany Law School, didn't know each other at Union. He was a comparative sociology major who spent afternoons on the football field. She was a pure mathematics major who spent hours training with the swim team. Bill likes to relate retired math professor Ted Bick's recollection: “Ted says that Donna was a one of the best students at Union, and I was a good football player.”
Today, Bill, a native of Tribes Hill, is deputy counsel for the state Division of Parole. Donna, who grew up outside Boston, is chief counsel at the New York State Tax Appeal Tribunal. Bill has joined the board of Fight for Sight, based in New York City. His job as an attorney is stimulating and it pays the bills, he says. But his work on behalf of FFS is “the most fulfilling thing I do.”
The family is not new to adversity. Donna beat advanced breast cancer in 2001 after a series of surgeries and aggressive chemotherapies. Bill says that Donna's courage during that ordeal has given them the strength to face Cole's challenge.
But much of their strength comes from Cole himself. Last Christmas, when Bill and Cole sat down to read a book, the youngster said, “Dad, someday I won't be able to see, so maybe I should do it in Braille.”
“What do you say to that?” his father asks.
The second annual edition is set for Aug. 24, 5 to 10 p.m. at Central Park in Schenectady. Two popular blues bands-the George Boone Band and the Maynard Brothers Band-will headline.
All proceeds raised at ColeRPalooza will benefit Fight For Sight, Inc., a non-profit organization that supports cutting-edge research in the area of RP and other vision-related diseases. To make a donation to help Cole and others like him, please visit www.fightforsight.com or write t Fight For Sight, Upstate New York Chapter, P.O. Box 535, Newtonville, NY 12128.