Proceeds from Naperville man's toy sales help battle muscular dystrophy
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Marty Karlin was taking boxes of his newly marketed "ShtankOut" toys to a UPS store when an employee asked him what he was sending out. The small, colorful, smiley characters that eliminate odors caught her eye.
They would be perfect for parents looking to throw a little something extra in a package for a college-age son or daughter, she told him. Why not sell them in the store?
Karlin, a Naperville resident, had just found another market in a growing number of retail outlets selling his new fundraising tool for muscular dystrophy. A portion of the $4.99 to $5.99 price for every Miracle Monkey, Funny Face and their pals goes toward research for Duchenne muscular dystrophy, the muscle-wasting disease that Karlin's 10-year-old son, Ryan, was diagnosed with five years ago.
Karlin and his wife, Geri, hope their efforts will help keep Ryan doing the activities he loves beyond current expectations. Boys with Duchenne muscular dystrophy normally become wheelchair dependent before age 13 and many do not live beyond their mid-20s. As the disease progresses, it leaves them unable to move their legs, arms and hands, and eventually attacks the heart and lungs.
"Things need to happen quickly," Geri says. "You have to have hope."
Geri, who has a background as a registered nurse, saw her own brother, Patrick, die of Duchenne muscular dystrophy at age 17. But the Karlins point to advances that have been made since then. Ryan, who is being treated at Cincinnati Children's Hospital Medical Center, has been taking steroids since his diagnosis to fight inflammation and slow the deterioration that causes the muscle to turn into fatty tissue. Because steroids stunt growth and make fractures more likely, he also takes medications to counter those effects. Still that's an improvement over the lack of treatment available when Patrick was alive.
"He's still walking at almost 11 years old," Marty says.
Ryan also has played hockey and baseball with coaches willing to make some adjustments for him, and supportive teammates and parents cheering him on.
"He can hit the ball, but he has a hard time running to first base," Marty says.
Ryan might not be able play sports next year, he says. Running has become more difficult, as has climbing stairs. The Karlins recently purchased a motorized scooter to help Ryan keep up with his friends.
"He loves sports," Geri says. "It's hard to be an observer when you want to be a player."
Finding the desire
It was Ryan's love of sports that gave the Karlins their first inkling that something was wrong. Ryan was in kindergarten and already a hockey player when Geri noticed that her son was unable to get himself off the ice when he fell unlike the other kids on the team. Then Ryan's teacher told his parents he was always the last child to get up off the floor after a storytime.
"I thought he just might need therapy," Geri recalls.
When a blood test confirmed what the problem was, the Karlins were devastated. But within a year, they had made a decision — they would do something rather than nothing.
"I feel better doing something," Geri says. "It shows Ryan that we're fighting for him. He has to fight, too."
The Karlins started a nonprofit organization called Rally for Ryan and hold a fundraiser every year at White Eagle County Club. They've raised about $150,000 annually for four years, and were able to donate $50,000 in a matching fund grant for the MDA Chicago Muscle Walk last year at Soldier Field.
Still, the Karlins, who have three older daughters, wanted to do more. What started as a family joke gave Marty the idea for ShtankOut. Marty opened his daughter's gym bag containing ballet slippers and commented, "What's that shtank I smell?"
His daughter said she had never heard that word before and for months they joked about it around the house. His kids urged him to create a "shtank" product.
"The kids kept pushing me and finally I made a one-page marketing brochure," he recalls.
His children and their friends liked it. An electrical engineer who started and sold a local technology firm, Karlin began working on design and how to manufacture the new product. It's been a learning experience, he admits.
"I feel stupider than stupid every day," he jokes, but acknowledges that having an entrepreneurial background helps. "It made me not afraid to go forward with this product," he says.
Karlin introduced ShtankOut at the American International Toy Fair in New York in February and it sells on amazon.com. This month, he took it to the Supermarket Representative Show near Syracuse, N.Y., where he received orders for 5,000 more. Naperville stores selling ShtankOut include several Walgreens, Oswald's Pharmacy, The Soccer Edge, Learning Express and The UPS Store on Route 59 in Naperville. Available in five characters — Smiley, Kicks, Funny Face, Aspen Pup and Miracle Monkey — the clip-on plush toys are filled with silica gel beads that absorb odors for about three months with each character giving off a fruity scent of its own.
With millions of smelly lockers and gym bags in the world, Karlin figures he's got a market. What's more, his characters are cute, making them collectible. Karlin foresees creating different lines of characters, including a sports line.
"We hope to make it a brand where the kids are actually asking for other products, like ShtankOut mints, ShtankOut gum, ShtankOut toothpaste, deodorant and mouthwash," he says.
Each package carries a label saying a portion of the cost goes to fight Duchenne muscular dystrophy.
"My thought on this product was maybe this was a way to raise more money," says Marty, who sits on the board of Parent Project Muscular Dystrophy, which raises money for Duchenne research. "(Roughly) $100,000 at a time doesn't do as much as you would like it to do, but if we could sell millions of these, we could change the landscape a little bit."
Reason to hope
The research into Duchenne muscular dystrophy is progressing, the Karlins say. A disease that occurs in about one of every 3,500 boys (and very rarely girls), Duchenne is caused by a defective gene associated with a missing protein called dystrophin that helps keep muscles intact.
The disease may not appear in very young children because their bodies produce another protein called utrophin that stimulates muscle repair. The production of utrophin declines as a child grows older, but in boys with Duchenne, dystrophin does not take over the job of muscle repair as it normally would.
The Muscular Dystrophy Association is funding research on a number of approaches that are promising, says Chris Zupfer, divisional director of business development with MDA. One involves replacing the missing dystrophin with utrophin and another patching the missing pieces of the gene.
"It's the best time in history to be involved with Duchenne. They're showing a lot of progress," Zupfer says.
Zupfer said improved care also is extending the life expectancy of men and boys with Duchenne. More are now living into their 30s, and some have been known to live into their 40s and 50s, according to the MDA website.
"Care is unbelievably better than it's ever been," Zupfer says.
The fundraising approach the Karlins have taken is both helpful and unique, he says.
"I think it's absolutely inspirational what they are doing," he says. "They're making a difference."
The Karlins hope the advances in research will come in time to help Ryan continue to walk and participate in the activities he enjoys. Meanwhile, they are determined to help Ryan live life as fully as he can. He loves Legos, video games, Xbox and going to hockey games.
"He's a huge Blackhawks fan," Marty says.
"Ryan's a pretty happy kid though he has his moments," Geri adds. "He doesn't dwell."
The Karlins also try not to.
"Every single day, we enjoy because we don't know what tomorrow brings. To really, truly live in the moment is a gift," Geri says.
For information on ShtankOut, contact (630) 640-2900 or shtankout.com.
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