Project to help Ohio girl having a global impact
Nonprofits partner to raise funds for rare disease.
Two grandparents’ decision to attend a Toledo Mud Hens game on July 13, 2014, has had farreaching results for a group of northwest Ohioans and even impacted people around the world.
All that was needed was an oversized yellow bird, a giant green frog and good Samaritans.
Rick Stewart, the grandfather of Carly Kudzia, was given tickets by his employer, Toledo Refining Co., to a suite at Fifth Third Field on what happened to be mascot promotion day. As he and his wife, Sandra, bounded through the corridors, they met Samphibian the frog, the mascot for FoodieCards.
Stewart struck up a conversation with Sam’s handler, Gary Ross, and in a matter of days, a new charitable effort was formed.
“From there, we fell in love with the whole idea,” Ross, 60, said. “You just never know where you’re going to meet people.”
Carly, 5, was diagnosed with progeria in 2011. Since then, her parents, Heather and Ryan, have made it their mission to raise funds for progeria research.
Progeria is a very rare, fatal, genetic condition, characterized by accelerated aging. It occurs in about 1 in 8 million newborns. Only 80 children worldwide have the disease and two live in northwest Ohio.
Children with progeria die of the same heart disease — arteriosclerosis — that affects millions of normal aging adults.
Instead of occurring in older adults, children stricken with progeria may suffer strokes and heart attacks before the age of 10.
Ross and Todd Gagne created FoodieCards in 2013, with the goal to help individuals, schools, churches and other groups with fundraising. FoodieCards, which cost $30, are a real playable deck of cards that feature $10 off your order at 54 local restaurants. Half of the proceeds go to Carly’s charity, Carly Cares.
More than $15,000 has been donated from the sale of FoodieCards. A recent fundraiser at the Franklin Park Mall raised nearly $2,500 in additional money.
“It’s all more than what we would have brought in,” Stewart, 67, said. “At least 10 percent of the money we bring in is from FoodieCards.”
Not bad for a venture that began with skepticism.
When Stewart first informed his daughter-inlaw about FoodieCards, Mrs. Kudzia thought it was too good to be true until she read the company’s website.
It’s huge, Mrs. Kudzia, 41, said. “Last year was a huge increase (in money raised) and that was mostly because of FoodieCards. Those dollars have helped us do some huge things that we would not have been able to do.”
Stewart, who was described by Mrs. Kudzia as a “walking, talking Carly Cares machine,” sold more than 200 decks of cards to co-workers and more than 300 to members of the Local 50 plumbers and pipefitters union.
In all, more than $10,000 was raised in 2014.
“I’m always looking for fund-raisers to cure progeria,” Mr. Stewart said.
Loma Linda Restaurant in Swanton hosted a benefit that raised several thousand dollars in a matter of hours. It’s long been a favorite eatery of the Kudzias and a place Carly’s frequented. It was so much so that co-owner Jeanie Kunzer worked Carly into the restaurant’s advertising.
This month, Carly will appear on the “Good Morning America” screen in Times Square to promote the Children’s Miracle Network Hospitals Band Together For Kids holiday campaign.
“Carly really pulls on the heartstrings,” said Gagne, 51. “She’s such a cute, energetic kid, and you want the best for her. It’s one of those things that really gets you. We want to do whatever we can to extend her life or find a cure. It’s such a rare disease that to fund research and find a cure, it sometimes might be at the bottom of the totem pole.”
The lion’s share of every dollar raised goes to a research grant in partnership with Progeria Research Foundation. Medical experts have told the Kudzias that a new way to treat progeria could come from the donated dollars.
“For everyone in our community to step up, I wasn’t ready for that,” Mrs. Kudzia said. “I couldn’t have known that it would last and people would be invested and want to know how she’s doing and want to help.”