CHILDREN EXECUTE EVENT TO HELP THOSE WITH LOU GEHRIG’S DISEASE
September 29, 2008
By Jennifer Bradshaw, Keyport Bureau
There are children’s events, and then there are events that are for, with and fueled by kids.
The Carnival for PALS (People with ALS), held Sunday afternoon at the Driftwood Cabana Club, was definitely of the latter.
ALS (amyotrophic lateral sclerosis), commonly known as Lou Gehrig’s disease, attacks nerves that control muscle movement in the body, limiting or stopping movement and body function.
On the local level, the event drew hundreds of people to the club and entertained them with carnival games, inflatable rides, food donated from local restaurants, crafts, video games, a silent auction and performances from young musicians.
At a glance, it seemed like something out of a kid’s dream: bright colors, lots of music and fun everywhere you turned. But it was all for a cause, as proceeds from the event will benefit the ALS Therapy Development Institute, a leading nonprofit ALS research company in Cambridge, Mass., and the Joan Dancy and PALS Support Group, based at Riverview Medical Center in Red Bank.
“What started as an awareness event has turned in a nice fundraiser,” said Sean Magovern, executive director of the support group.
Magovern, who got into the spirit by donning a colorful top hat, said the event was not only staffed by children, but was designed and put together by them as well. Adult supervision was needed at times, but the kids were the driving force behind all of this, he said.
For many of the young staffers, family was the reason they donated their time.
Sean Callahan, 11, who, along with his brother Matthew, 13, performed with their band to a large crowd. Sean and Matthew’s mother, Pam, was diagnosed with ALS two years ago.
From her wheelchair, Pam watched while Matthew stopped to dedicate a song to her, before the band launched into a cover of a popular song.
Both Matthew and Sean played big parts in organizing the carnival.
“It’s a great event. I’m glad everyone could come,” Sean Callahan said after coming offstage. “A lot of my friends are helping out.”
Magovern said the event was held last year, but this year’s carnival appeared to have drawn three to four times as many people as last year, he said.
Along with a large number of attendees came donations, with money being given in various ways: through a large silent auction featuring practically every type of gift basket imaginable, as well as a Lego re-creation of Yankee Stadium and a “Kid’s dream” home entertainment center, and through various sponsors, including Carol Stillwell of Stillwell-Hansen Inc., who announced that the company will make a $10,000 donation on behalf of all the volunteers to put toward finding a cure.
At the support group information table was Magovern’s son, Mike, 13, who said the Joan Dancy support group was started by his grandfather, Terry Magovern, in honor of Joan, his fiancee, who was diagnosed with ALS.
It was her dying wish to have an organization started in support of people with ALS, Mike said.
The purpose of the organization is not simply to raise money for ALS research, but to help improve the quality of life of those with the disease, he said, saying that insurance companies often do not cover things such as wheelchairs.
Mike’s cousin Andrew Damato, 12, of Howell was also on hand.
“Andrew came last year as a spectator and volunteered this year,” Mike said.
Outside in the pool area, a tent bursting with games and treats was set up. Carolyn Rue and Jackie DeMarco were there on behalf of their cooking studio, Taste and Technique, based in Fair Haven.
The co-owners, who came to work a table in lieu of donating a certificate, were helping children dip goodies into chocolate fondue for the mere price of a few tickets.
“We’re here to support the cause,” Rue said. “We’re impressed with the crowd.”
Also impressed with the number of attendees was Glenn Hall of Bergen County, who was hanging around the silent auction with his father, Jim Hall of Aberdeen. The two men sported blue T-shirts that said “Journey for Joan” in honor of Glenn’s mother and Jim’s wife, who died in August of the disease.
“We came here last year with my mother,” Glenn said. “It’s an incredible difference from last year to this year. The amount (of people) is tripled, if not more.”