She couldn’t walk, run or bike –- but she could ride a carousel

Karen Wyckoff’s parents and volunteers honor legacy by organizing Rein In Sarcoma each summer at Como Park

Karen Wyckoff

By JAN WILMS

The usual way to raise funds for a worthy cause is to walk, run or ride a bike. But when Karen Wyckoff wanted to raise funds for education and research about sarcoma, a connective tissue cancer she had been diagnosed with, she had been too weakened by the disease to do those activities.

However, she could ride a merry-go-round, and she rode a horse to raise funds to fight sarcoma at Cafesjian’s Carousel in 2001. That first event had seven sarcoma patients and a total of about 250 people attending. In all, $10,000 was raised, which went toward sarcoma research at the University of Minnesota.

Karen died a month after that first fund-raising gathering, but the carousel rides continue in Como Park, where Cafesjian’s Carousel is now housed. The 19th annual Party in the Park will take place July 29 at Como, from 6 to 9 p.m.

Rein in Sarcoma (RIS), co-founded by Karen and her parents, Pete and Sue, has grown at a tremendous rate over the years, promoting education, support for patients and their families, research and a search for a cure for sarcoma.

Sarcoma often masquerades as sports injury

“You can get sarcoma anywhere in your body,” said Amy Hoban, co-chair with Allison Mulcahy for Party in the Park. “The joke is that there are more flavors of sarcoma than Baskin Robbins. It could be based in cells, muscle, tissue, bone. Mine was in my abdominal wall.”

She said that people of any age can get sarcoma, but it frequently hits young people in their teens and early 20s, when they are active and athletic.

“It often masquerades as a sports injury,” Hoban explained.

“Although a rare cancer, it comprises 17 percent of children’s cancer,” said Janelle Calhoun, the executive director of RIS. She added that symptoms may or may not be painful, and can include a lump or bruise that may grow at a rapid pace or grow slowly. Some tumors can grow from the size of a pea to the size of a grapefruit in around 40 days.

Calhoun said the organization has an education committee, comprised of doctors from Mayo, the University of Minnesota, Children’s Hospital, Regions and Children’s Masonic Hospital. Education has been a top priority for RIS. “Some surgeons are not familiar with sarcoma, and they do a small incision and take out the tumor in strips. Sarcoma reacts negatively to this,” Calhoun said.

“Tumors have to be taken out in their entirety with a lot of tissue.”

Rarity makes it difficult to get good information

She said Karen and her family had a vision to educate medical professionals, patients and their families. RIS has raised money for research to understand how these tumors work. “We are sometimes still using data and information that was effective in the 50s and 60s,” Calhoun said.

Because sarcoma is so rare, Hoban said not much research money is given to explore sarcoma. “So we sponsor research, some of it looking at things that have worked in other cancers, even dogs. We have a vet and genomic testing has been studied to see what could apply to sarcoma.”

And for the past 10 years, third year medical students have received training in sarcoma so that they can advocate for all the years they are in practice.

“So many committees have sprung up,” Calhoun continued. “We have development, research, finance and education committees and a marketing team and board that are made up of really caring and dedicated people.”

Although most of the volunteers are survivors or patients and their family members, or people who have had some connection with the disease, others volunteer to support what they consider a tremendous cause.

Patient and family support are important parts of the RIS mission. Tote bags are provided for nurses to distribute to current patients. And the patients can get a notebook with information about sarcoma that can be given out or mailed or downloaded online.

Hoban said the rarity of sarcoma makes it difficult to get vetted information about it. “And even if you did get something online, you wouldn’t get much information,” she said. “So we have a medical advisory board that makes sure the information in the notebook is correct... The first thing I did when I was diagnosed was download it.”

Mentors, coffee meet-ups, galas, speakers and more

Patients can also get matched up with a mentor who has had sarcoma. This can be a local match or one across the country. “Getting good information and being able to talk to other patients is very difficult,” Hoban said, “and this is a way to support patients.”

She said that support for patients is part of what Party in the Park is all about. “Whenever you go to an RIS event as a patient you are offered the opportunity to wear a sunflower corsage,” Hoban said. “You can see others who have the corsages, and go up to anyone and ask them about their story and their care.”

There is also a Winter Gathering and a Fall Gala. There is a coffee for survivors that meets every week. Another fall event is Rein in Sarcoma Remembers for those who have lost someone to the disease. Guest speakers are invited to talk about grief.

“With all of our events, we try to have something social and something educational,” Hoban said. There are golf fundraisers and bike fundraisers, with groups continually meeting throughout the year to plan and to educate and to support.

July 29 event starts at 6 p.m.

Things have come a long way since Karen Wyckoff started the first event with seven patients and about 250 people in attendance. Over $2 million has been raised for sarcoma research.

This year’s Party in the Park begins at 6 p.m. A tribute ride on the carousel will kick off the party, with all patients and survivors taking the first ride. For the rest of the evening, Como Park provides free rides on the carousel to everyone.

Although the public has always been invited, this year a special effort through social media is being extended to bring in even more attendees. There will be activities for children, including face painting and inflatables. Elpis, an organization that assists homeless youth, will offer participants the opportunity to build their own birdhouses and birdfeeders. There will be fire dancing and food.

“We would love for everyone in the neighborhood to feel welcome and have a fun night,” Calhoun said.

Party in the Park is free, but visitors are asked to register on the RIS website at www.reininsarcoma.org.

Other than Calhoun and a medical educational professional, RIS relies on volunteers. Over 110 will come together on the day of Party in the Park to help. RIS also has help from major sponsors: Walser/Subaru, Mayo Clinic and the University of Minnesota.

“The hardest part,” said Calhoun, “is our friends passing.” She added that there are also many celebrations of survivors. “I am so proud everything I see every day. There is a lot of passion and a lot of hope.”

Survivors