Posted Dec. 30, 2004
By Elaine Kauh
Green Bay Press-Gazette

It was a huge surprise when Jillaine and William Toebe each received new cars on “The Oprah Winfrey Show” in September.

But a bigger, better surprise awaited them as a result of their good luck.

As it turned out, the national attention the Toebes received from that show gave the Kewaunee County couple a chance to help a cause they’re close to — the fight against amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s disease.

“It has just opened so many doors for what we want to do,” Jilliane Toebe said. “I really believe it was a twist of fate.”

Jillaine Toebe, a stylist at Creative Hair Designs & Tanning Salon in Ashwaubenon, has been involved with friends and co-workers in a local effort to raise funds for ALS.

They organized what became an annual event, Walk Around the Block, beginning in June 2003 as Tim Pfaffendorf, the former owner of Creative Hair, battled the disease. He died in October 2003.

The walk has been held simultaneously at Creative Hair Designs in Ashwaubenon and in Catawba, near Pfaffendorf’s home town of Kennan.

And Creative Hair Designs owner Keith Abts began an annual golf outing to raise funds for ALS.

The series of events following the Oprah giveaway led to these efforts becoming bigger than the supporters imagined. Walk Around the Block is now partnering with a national ALS organization, Ride For Life, Inc. — a major source of support for the local effort.

It all began earlier this year when Jillaine Toebe decided to submit material about a completely unrelated topic to The Oprah Winfrey Show — some footage of her husband’s beat-up 1992 Chrysler LeBaron. It fit one of the subjects listed on the show’s Web site.

A show staffer contacted the Toebes and said the topic fell through, but they would get tickets to a taping in Chicago as a consolation.

In September, they were at the taping. That surprise episode is now well known, as everyone in the audience was given a 2005 Pontiac G6.

The national media blitz that followed landed the Toebes a number of radio, TV and print interviews.

In the midst of all this, another purpose — getting more publicity for the ALS cause — was taking shape.

The Toebes got a call from “The Daily Show with Jon Stewart,” a satirical news show on the cable channel Comedy Central. They wanted to do a segment on winning the new cars.

Back in Chicago for the Daily Show taping, they met Bob Wiltfong, an actor/comedian who did the segment.

As it turned out, Wiltfong is a big supporter of the nonprofit Ride For Life Inc. and its founder, Chris Pendergast, an ALS survivor.

Through Wiltfong, the Toebes got in touch with Pendergast and now, Walk Around the Block and Ride For Life Inc. are partners in the fight against ALS.

“It’s actually our first time teaming up with a local organization and we’re very excited about it,” said Jennifer Lowy, executive director of New York-based Ride For Life Inc. “They’re on the brink of great success with their event.”

Ride For Life Inc. holds an annual event in which patients ride their wheelchairs about 150 miles over 10 days to raise funds for research, patient support and public awareness.

In Wisconsin, Tim Pfaffendorf’s family, including his wife, Cathy, and sister, Pam Pfaffendorf, continues to be active in the cause, helping to raise thousands of dollars each year.

“I have never seen a more dedicated group of people,” said Pam Pfaffendorf, who said that the increased awareness of ALS keeps her brother’s memory alive.

“It was meant to happen,” she said. “When he was sick I promised him I would do something about this disease.”

Cathy Pfaffendorf said increased awareness and funds for research will hopefully lead to a cure for ALS — a fatal disease with no known cause.

ALS patients gradually lose muscle control, losing the ability to walk, write, speak, breathe and eat. Tim Pfaffendorf eventually decided to stop being fed, and he died within days.

“You do not want to see anybody else go through that,” said Cathy Pfaffendorf, who helps other families of ALS patients.

Jillaine Toebe’s good luck and good will have been a tremendous help, she said.

“It’s so touching to think that she wants to help continue to raise awareness with ALS, rather than just focusing on, ‘I won two cars,’” she said.

If something so extraordinary was going to happen to anyone, it would happen to the Toebes, a friend said.

“It couldn’t have happened to two nicer people,” said Patty Tomasko, a co-worker at Creative Hair Designs who helps coordinate Walk Around the Block. “I just think it’s great.”

“When she ended up on Oprah it didn’t surprise me,” Tomasko said of Jillaine. “She’ll try anything.

“She turned something that was for her into something that helps other people.”

To get involved

• For more information about Walk Around the Block or to volunteer for the next event scheduled for June 2005, call Patty Tomasko at (920) 494-1442 or Jillaine Toebe at (920) 619-2607.

• For information about ALS and Ride For Life Inc., visit www.rideforlife.com.