February 23, 2005     Willow Glen, California Since 1992
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Photograph by Vicki Thompson
JW's Activist: Willow Glen resident Debra Weed became involved with JW House after she met JW Knapen, who has a brain tumor, at her church. She soon began looking for businesses to help sell these blue bracelets to raise funds for JW's dream—a place to house cancer patients and their families.
Businesses raise money for cancer patients
By Alicia Upano
Tour de France cycling champion and cancer survivor Lance Armstrong may have popularized rubber bracelets with his yellow LiveStrong wristband, but it was 16-year-old Jan-Willem Knapen who brought the blue, rubber bracelets to San Jose along with a vision that has inspired others.

Jan-Willem, known as JW, dreams of building a place where young cancer victims and families can stay while undergoing treatment. The idea of JW House, to be built at Kaiser Permanente's new medical center in Santa Clara, is inspired by his own struggle with a brain tumor, discovered in 2002. His condition is terminal.

Willow Glen resident Debra Weed met JW through her church, St. Martin of Tours. Weed's son also attended Bellarmine with JW. "He's an amazing kid," Weed says. "He's so determined to get this house built."

As a member of JW House's board of directors, Weed thought she could stimulate fundraising efforts by selling JW's signature bracelets in local businesses. Late last year, she began her quest in Willow Glen.

The blue, rubber wristbands are inscribed with JW's motto: "Never ever give up." The wristbands sell for $2 and benefit the JW House campaign to raise $1.2 million. So far, the organization has raised $250,000.

"It's just taken off," Weed says.

Since she began approaching businesses in December, nearly 10 of them have embraced the bracelets. Weed provides each company with wristbands and the businesses return the profits to Weed.

Chris Carris, owner of the Willow Glen Coffee Roasting Company, was the first person to sell the bracelets, Weed says. Since the beginning of the year, cafe customers have contributed more than $700 to JW House through their bracelet purchases.

"It's been accepted pretty well," Carris says. Many customers first confuse the bracelets with the LiveStrong wristbands, but once they hear JW's story, they are anxious to participate in a local cause. Carris says the JW House bracelets fit well with the coffee roasting company's community outlook. On a personal level, it was JW's mission that won Carris. "This fellow's using the remainder of his life to do something good," he says.

That was the same thing that attracted Willow Street Wood-Fired Pizza server Jen Lemus to the bracelets. After spotting the blue band on a stranger, Lemus visited the JW House website. "I read the whole story and I was bawling. I thought, what could I do to help?"

With Lemus spearheading the effort, Willow Street began selling the bracelets in January. The restaurant carries a flier for people who are interested in reading JW's story.

On Feb. 23, the restaurant will also donate 20 percent of all revenue to JW House for patrons who come in with a flier distributed by Weed at area schools, churches and neighborhoods.

For other Willow Street employees, JW's story has made an impact, too. John Testani recently ran in Kaiser Permanente's half marathon with a JW House T-shirt, attracting the attention of many Kaiser employees excited about JW House.

"It's been amazing," Lemus says. "Everyone shows so much support."

Aqui Cal Mex Grill has even started selling the bracelets even though it's against corporate policy. Andrea Antoni of Aqui says the restaurant's employees lobbied to participate and the corporate office acquiesced.

But one of the most enterprising of JW House bracelet sponsors is Rey Yusico, manager of Gold Star Jewelers on Lincoln Avenue.

Yusico first spotted the bracelets in Willow Glen Coffee Roasting Co. and bought one immediately.

For Yusico, much of 2004 was spent battling colon cancer. After being diagnosed in April, he had surgery in June and completed his last chemotherapy treatment in December—a "big, big Christmas present," he says.

JW's story had hit close to home and within days, Yusico returned to Willow Glen Coffee Roasting to find out how he could help.

After getting in touch with Weed, Yusico sold all 50 bracelets within two weeks and needed more. He also pitched businesses in Willow Glen and at Westfield Shoppingtown Valley Fair to sell the bracelets.

"I asked them help support him and make his dream come true," Yusico says.

Although Yusico has been selling the blue wristbands for less than a month, he's recruited Lincoln Avenue businesses Cooking Etc., House of Nutrition and Mann's Jewelers. Big Dog's Grill on Foxworthy Avenue, and Valley Fair businesses Creative Jewelers, Samuel's Jewelers and Crescent Jewelers are also selling the bracelets with Yusico's prodding. He's even signed up a restaurant in South Lake Tahoe to sell JW House wristbands.

According to Weed, the JW House board signed a letter of intent with Kaiser Permanente in early February to lease a half-acre of land for the JW House site. When JW House first organized in early 2004, the fundraising goal was $250,000. The organization has just reached that goal and is looking at $1.2 million to build the facility.

The JW House dream is a byproduct of JW's friendship with his Kaiser pediatric oncologist, Dr. Alan Wong.

Wong once mentioned to JW that he wished Kaiser had a place for parents to stay while their children were in the hospital. JW, in turn, had hoped to raise money for such a facility at a reunion in Belgium—but the trip had to be cancelled because of his health.

Anne-Marie Knapen-Asnong shared her son's hope via email with a friend in Belgium, who passed it on.

In May 2004, JW walked into Wong's office and handed him a check for $10,000.

"It's amazing," Wong says. "Hands reach out from Belgium and touch us in America."

Knapen-Asnong, a veteran of many, many hours and nights in hospitals with her son, knows firsthand what a JW House would mean to families dealing with a child's illness.

In hospitals, children are allowed to visit family members for just a few minutes. So when JW was in the hospital, any visit with his 9-year-old twin sisters, Elizabeth and Helena, and his 4-year-old brother, Alexander, was very brief.

A JW House would have given JW and his siblings a place to visit for a longer period.

In hospitals, there are few private areas, so conversations and decisions often have to take place in a hallway or a waiting room. A JW House would give parents a private place to deal with such things. It would also provide a place for parents who have traveled a great distance to stay while their child is under treatment. Often they are forced to stay at motels or even in their cars.

Originally, JW was given only six months to live. That was more than two years ago, Weed says, and the idea of building JW House keeps JW motivated. Donors, businesses and people who purchase the wristbands are all aiding this goal, she adds. Even Booksin Elementary School raised $3,000 in February by selling wristbands and collecting donations.

"They can drive by that facility someday and know they contributed in some way," Weed says. "We all try to leave the world a better place. What we all hope to do, he's doing it at such a young age."

For more information on JW House or selling the JW House signature wristbands, contact Debra Weed at 408.202.1263 or via email at debra@jwhouse.org. Check for upcoming events at http://www.jwhouse.org.

Mary Gottschalk contributed to this story.

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