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Karen Wyckoff Rein In Sarcoma Fund
A Fund for Sarcoma Cancer Research, Education and Survivor Support

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New Hope man works to 'Rein in Sarcoma'
with summer events
BY BRYCE EVANS - SUN NEWSPAPERS INTERN (Created: Wednesday, July 11, 2007 10:43 PM CDT)

Over 20 years ago, New Hope resident Kraig Kuusinen had to fight for his life. Now, he is fighting to save others.

Kuusinen, 40, is a sarcoma survivor and now works diligently with the Karen Wyckoff Rein in Sarcoma Fund (KWRSF), a non-profit group dedicated to raising awareness of sarcoma cancer.

KWRSF will be hosting its seventh annual Rein in Sarcoma summer event Monday, July 23, at Como Park in St. Paul.

For Kuusinen, his fight with cancer has been much longer.

In April 1986, Kuusinen, then a sophomore at the University of Minnesota, was diagnosed with osteogenic sarcoma in his leg, an uncommon and deadly form of bone cancer.

"I was shocked," said Kuusinen of his initial reaction to learning that he had cancer. "I was absolutely devastated."

Sarcoma is a "rare and aggressive" type of cancer that attacks the connective tissues and bones of any part of the body, according to the KWRSF website.

Kuusinen was forced to go through round after round of chemotherapy during his spring semester, before being able to have his cancerous tumor removed just after finals that May.

After the cancer in his leg was sent into remission, Kuusinen was hit with an even more brutal blow in 1987: doctors found traces of sarcoma in his brain.

The process started all over again, with Kuusinen receiving more procedures and more chemotherapy.

Fortunately for Kuusinen, he was once again able to send his cancer into remission.

"It really made me appreciate the simple things in life a lot more," said Kuusinen of surviving cancer not once, but twice in just over a year. "I really don't get that fussy over things anymore ... It really made me much more easygoing in life.

"Having gone through it all, it really made me feel for the other people that had cancer, the people who went through the same experiences that I had."

Armed with his newfound empathy for those who have suffered the same way that he did, Kuusinen has now decided to give back.

"I received a list in the mail from the U of M that listed all of the survivors of sarcoma in the area," said Kuusinen. "It also gave information on the [KWRSF] summer events, the picnic and silent auction. The doctor that I had worked with through my experiences was a part of it, and I decided that I would check it out."

After his first time visiting the events, Kuusinen decided that this was something that he had to be a part of.

"I saw people that I knew and people that were going through what I had to, and I just decided that I needed to help out," Kuusinen said.

Now, Kuusinen has been volunteering with and donating to the fund for over two years, and feels that it brings a unique and much needed charitable element to a type of cancer that is not often discussed.

"The thing that sets [KWRSF] apart is the way in which it focuses directly on sarcoma victims and survivors," said Kuusinen. "It effects so many people, especially children, and this type of event raises people's awareness of something so specific."

According to the KWRSF website, between 15-20% of all childhood cancers are a form of sarcoma. In 2006, approximately 9,350 people were diagnosed with the disease in the United States.

"It doesn't have the extreme number of people [being diagnosed] as the other forms of cancer do, which makes it hard to raise awareness," said Kuusinen. "It is kind of an 'orphan cancer,' because not as many people are behind it like they are for other forms."

This was the reason that Karen Wyckoff started the Rein in Sarcoma event in 2001.

Similar to Kuusinen, Wyckoff was diagnosed with sarcoma while attending college when she was 21. Wyckoff, who attended Roseville schools growing up, conceived the event in order to raise awareness, to raise funds and, most importantly, to bring survivors together.
"It makes it so much better, to know that there is someone else out there," said Kuusinen.

Though Wyckoff fell victim to sarcoma shortly after the inaugural event, her family and friends have continued her dream, creating the foundation that they named after her.

As the fight continues for Kuusinen and many other sarcoma patients, KWRSF continues to bring them hope.

"You have to keep a positive attitude," said Kuusinen. "When things get tough, you have to be able to look at all of the good times that you have had, the good things in life. That's what gets you through it."

The 7th Annual Rein in Sarcoma summer event will include an array of family-friendly activities, including food, music, a performance by a comedian, children's activities, a silent auction and raffles and their ever-popular carousel.

For more information about the KWRSF summer events and foundation or about sarcoma cancer, visit www.reininsarcoma.org.

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