A ride among the stars

Fundraiser supports the Pediatric Brain Tumor Foundation

By Heather Ruenz

SLN Staff

It’s not every day that people get a chance to spend time with some stars but that’s precisely what an upcoming fundraiser offers. The Ride for the Kids raises money for the Pediatric Brain Tumor Foundation and those given special treatment that day are referred to as stars.

Stars include children who are battling or have beaten a brain tumor and their immediate family members as well as those families who have lost a child to a brain tumor.

The scenic, police-escorted ride will take off from the Walworth County Fairgrounds in Elkhorn about 11 a.m. and any make or model of street legal motorcycle is welcome.

The stars aren’t required to pay the registration and for those of them who would like to, they get to ride with motorcyclists.

“We prefer to know in advance how many stars and family members want to ride so we can do our best to have enough bikes and make sure those bikes are at the front of the line,” said Tony Ketchpaw, who along with his wife, Meghan, helps run the local event.

The stars – kids and their family members – taking rides are required to wear helmets, which are provided if they don’t have their own.

Against the odds

The Ketchpaw’s journey with a childhood brain tumor began when Meghan was pregnant and had a blood test that indicated Down syndrome. Further tests led to the determination it was a false positive but a mass was noticed on the baby’s brain. Their daughter, Kelly, was born full term and was developmentally delayed but caught up through therapy.

A follow up MRI showed a tumor that quickly grew in size leading to a 10-hour surgery where the entire tumor was removed.

Kelly, who is now 17, was diagnosed with Medulloblastoma, a cancerous brain tumor, followed by 18 months of chemotherapy and six weeks of radiation.

“Watching nurses wear rubber gowns and gloves to protect themselves from the poison they were putting into my daughter was extremely painful… but during everything she kept a smile on her face,” Meghan said.

Kelly has been cancer free for 13 years and will be a senior at Elkhorn Area High School this fall.

She enjoys participating in the Ride for Kids.

“It’s really fun and I switch who I ride with each year,” Kelly said.

She volunteers at Ridgestone in Delavan and Elkhorn with dinner and activities. She said she wants to go to college to become a nurse and work with children.

Another local star is Owen Lyons, who was diagnosed when he was 13 months old and will start high school in the fall.

“His right hand stopped working and they found a baseball-sized tumor in his left frontal lobe,” his mom, Cyndi Yanke, said.

Owen underwent surgery but because of the location of the tumor, doctors had to leave 30 percent of it followed by intraoperative radiation, which is more precise.

“They got all of it but there was scar tissue, which caused seizures. He’s good now,” Cyndi said.

He must be, given that he’s training for a triathlon for Children’s Hospital that will be held in late July.

The Ride for Kids will be Owen’s second time participating and he knows what he likes.

“He likes the slingshots so is hoping to ride with someone who has one of those,” Cyndi said.

Event has grown 

Bob McNamara, the regional director for the central region of the Pediatric Brain Tumor Foundation, said the Ride for Kids is one of the signature programs and actually pre-dates the foundation.

“It literally started with one couple whose neighbors’ daughter had a brain tumor so they created the event. Within six or seven years, there were 10 events across the country,” he said.

In 1991, they caught the attention of Honda motorcycles and that led to it being reformulated into the Pediatric Brain Tumor Foundation. It remains the foundation’s largest program with 25 rides across the country each year.

The July 21 event in Elkhorn will be the second year at the fairgrounds but the 17th year of the Ride for Kids in Wisconsin.

Last year the goal was to raise $35,000 and the event raised $42,000. This year’s goal is to raise $50,000.

Get to know the stars

McNamara said the celebration after the ride is worth being present for.

“We bring all the stars up on the stage and talk to them a little bit about their day and how the ride went. It lets people get to know them a bit,” he said.

“And there are sad moments, too, because there are kids who don’t come back for this year’s ride as they lost their battle,” he added.

While the local ride raises a lot of money, McNamara said participants are also part of an effort of not only helping families, but also supporting research.

“The survivor rates have gone up. There are still a lot of struggles but they’re living longer,” he said, adding that part of the challenge is that there are more than 100 types of pediatric brain tumors.

He said stars from throughout the area are invited to come to the event and every effort is put forth to make sure those that want to ride are given one.

“They love that experience. I think we had 11 or 12 brain tumor survivors at last year’s event, ranging from younger than the age of 5 to teenagers, along with one adult who was diagnosed as a kid with a brain tumor and now rides his own motorcycle,” McNamara said. “It was a great day.”

How you can help

The ride works like a walk, basically, with participants signing up, fundraising and showing up that day for the event.

Keeping in mind that stars do not pay to participate, online registration for riders is $40 – an option up until noon the Friday before the event – and the day-of it’s $45. Individual riders and teams of riders are welcome (see details on the website.)

The fee includes a Ride for Kids t-shirt, ride pin, and light breakfast and lunch.

A fundraising toolkit is available on the website and for those who register and raise $100 online by noon the Friday prior, they’ll receive a drawing ticket to win a new Honda CBR300 with an additional drawing ticket for every $300 raised.

“People who don’t ride but want to support the cause are encouraged to make a donation, and stop by the fairgrounds for lunch and music,” Tony said.

Meghan said they also spent time getting the word out along the route.

“We pass out information along the route in the hopes that people will come out and support the riders,” she said.

And though they’re hoping for good weather, it’s not a requirement.

“We ride rain or shine,” Tony said.

Volunteers are also needed the day of the event.

For more information or to register or volunteer, visit http://www.rideforkids.org/wisconsin or send an email to tonyk@starkcorp.us or meghanketchpaw@gmail.com.

Those looking to connect with other pediatric brain tumor families in the area are welcome to contact Cyndi Yanke at 262-215-9294 or mama2owen@gmail.com.