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05/03/2017 08:30 AMA woman approached Eddie Kolodziej seeking help for her elderly aunt, albeit help with a task not normally associated with someone who is 100 years old.
“A lady came up to me and said her aunt is 100 and has never been on a bike before,” Eddie says.
The woman explained that riding on a motorcycle and flying in a hot air balloon were two items on the woman’s bucket list. Eddie, one of the volunteers at the Hope Love Cure Avery Ride, was able to help the woman check both items off her list that day.
The biennial Hope Love Cure Avery Ride event is a fundraiser to raise awareness and money for a rare disease called CDKL5. According to the International CDKL5 Foundation for Research website www.cdkl5.com, CDKL5 is described as “CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment.”
It’s estimated that only around 600 cases have been diagnosed worldwide, but as awareness grows and more tests are done, that number is expected to rise. Since the disease is so rare, fundraising and raising awareness of the disease is always a major issue.
Eddie got involved with the organization through Mark Leopoldino, a friend whose daughter Avery was born with CDKL5. Eddie has been involved with the event for five years. The organization’s biggest fundraising event is a semi-annual 50-mile motorcycle ride. Eddie’s primary role at the event is to greet people and make attendees feel comfortable.
Eddie says his favorite part of being involved with the charity is “just the fact you get to meet so many great people and help kids.”
“Bikers are the most generous people,” Eddie says.
While the reputation of bikers may be that of gruff people who don’t want to be approached, Eddie is quick to point out how quick bikers are to volunteer to raise money.
“You see bike rides, but you don’t see Corvette rides, do you?” Eddie jokes.
Besides raising money for CDKL5, Eddie is involved in other charitable endeavors as well. Eddie has been an umpire with the Special Olympics baseball tournament since 1982. He was given an award for being a volunteer for more than 30 years last summer. Eddie says he’s now “just winding down,” and won’t be umpiring again this year, but he will still be on hand to help out.
When he’s not volunteering, Eddie works as an account manager at Cigna where he manages about 30 union employees. He enjoys going on walks to the beach, where even then he is able find ways to fundraise. Eddie collects shells, which is then able to paint and glue together to make different shapes. Some he keeps, and some he sells to raise money.
Eddie also enjoys spends time with his dog, Dallas, who goes everywhere Eddie goes.
“If she’s not allowed, to go, I don’t go,” Eddie says.
Dallas is named after the Texas city—Eddie is a big fan of the Cowboys football team. Eddie is able to combine his love of football and fundraising because Tony Dorsett, the Hall of Fame Running back who played with the Cowboys during the 1970s and ‘80s, is a regular guest at the CDKL5 fund raiser. In fact, Eddie can excitedly show a “Merry Christmas” text he received from the former superstar that’s still on his phone. Eddie called Dorsett “just a great guy” who has a “natural” demeanor.
Donna Whalen, one of Eddie’s friends, says she got to know him through volunteering together at CDKL5 events. She says she was moved by the compassion he shows for others. “He does it because he loves the children,” Whalen says.
Due to the tight-knit community formed by those involved with CDKL5 research, Eddie has met kids from around the country who suffer from the disease.
Preparing for the bike ride takes almost six months of preparation, so to make it easier the organization has decided to hold the event every other year. The event features a live band, food, drinks, and a car show. Unfortunately, aspects outside of his control can play a prominent role in the event. “We’ve put the effort into it, but is it going to rain?” Eddie says.
Due to weather concerns, the car show had to be canceled at the last event in 2016. However, any concerns that Eddie has about the weather are quickly overshadowed when he thinks about what the kids are going through on a daily basis.
“When you or I grew up our parents wondered if maybe we’d go to college. These folks want to know if their kids are going to live,” Eddie says.
Currently there is no cure for CDKL5, but recent studies into medical marijuana suggest that use by those suffering can cut the daily seizures from 10 a day to one a day, according to Eddie.
“We’ll keep going until there’s a cure,” Eddie says.
Eddie says he’s very proud to work with Avery’s fund because 97 percent of all funds raised goes to research. The rest goes to letters to thank sponsors and donors—”Nobody is riding down the street in a limousine,” Eddie notes of the charity.
So, far Eddie estimates more than $250,000 have been raised by the organization.
If interested in volunteering for the 2018 ride or donating, write to Eddie Kolodziej, 6 Plymouth Court, Clinton, CT 06413.