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North Park event to raise sarcoma awareness, funds

| Wednesday, June 25, 2014, 9:14 p.m.
Courtesy of Carla Firetto.
Runners participate in a previous Pittsburgh Cure Sarcoma 5K Cancer Run/Walk. This year's Pittsburgh Cure Sarcoma 5K Cancer Run/Walk will be July 12 in North Park..
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Tori Wisniewski of Marshall Township rides on the shoulders of her father, John Wisniewsk, during the 2013 Pittsburgh Cure Sarcoma 5K Cancer Run/Walk. Tori has multiple hereditary exostoses, a condition that makes her susceptible to developing sarcoma, a rare cancer of the connective tissues.This year's Pittsburgh Cure Sarcoma 5K Cancer Run/Walk will be July 12 in North Park..

Do not tell Darlene Wisniewski, 45, of Marshall Township that sarcoma is “the forgotten cancer” because she is reminded of it every single day.

She and her 9-year-old daughter, Tori, have multiple hereditary exostoses, in which bony spurs or lumps develop on the bones. This condition makes them susceptible to developing sarcoma, a rare cancer of the connective tissues — including nerves, muscles, fat, blood vessels, joints and bones.

To date, Darlene Wisniewski has endured 15 surgeries to remove the recurring lumps and tumors.

Her daughter suffers chronic pain.

To help raise awareness about the disease and funds for sarcoma research, Pittsburgh Cure Sarcoma, or PCS, is sponsoring its fourth annual Pittsburgh Cure Sarcoma 5K Cancer Run/Walk at 9 a.m. July 12 at the North Park Boathouse in McCandless.

Wisniewski is helping with the logistics of the event.

The Wisniewskis' neighbor, Floyd Grace, died from the sarcoma in 2013 at the age of 87.

Their musculoskeletal oncologist, Dr. Kurt Weiss of Hampton Township, was diagnosed with sarcoma when he was a 15-year-old student at North Hills Senior High School in Ross Township. A lump in his leg that ached throughout the day and night was his only symptom. When doctors told his parents how bleak his outlook was, they bought a funeral plot and planned his funeral.

Now a 40-year-old husband and father, Weiss has dedicated his life to treating sarcoma patients and researching cures for the disease.

Locally, the University of Pittsburgh Cancer Institute treats hundreds of new sarcoma patients every year, according to Weiss, who works there as a surgeon and scientist.

“The nature of cancer is that it doesn't want to stay put,” he explained. “If the sarcoma cells travel from a bone to the lung, that's when it becomes a problem.”

Sarcoma occurs in only about 1 percent of the 1.5 million new cancer diagnoses in the U.S. each year and in approximately 15 percent of childhood cancers. Its mortality rate hovers around 50 percent, according to PCS.

“Considering all the different cancers, sarcoma research is terribly underfunded. Because it is such a rare cancer, it only receives about 1 percent of all cancer research money,” Wisniewski said. “That's why they call it ‘the forgotten cancer.'”

Wisniewski became active in the cause to help make sure Tori has help if she needs it.

“My husband and I know (our daughter) Tori may never develop sarcoma, but if she does, we can't go back and decide we should have helped raise money for research, so we're doing it now,” said Wisniewski, who serves as the publicity director for PCS.

In addition to the run and walk through North Park, the event includes drawings, raffles and door prizes; live music; food and beverages; interviews with survivors and doctors; and a sarcoma candle memorial ceremony.

It has raised more than $300,000 and registered more than 4,450 participants since its inception in 2011.

Organizers are expecting 2,000 runners and walkers at this year's event.

“Most participants are running for friends who never won their battle,” said Wisniewski, referring to people such as Carl Firetto and former Shaler Area High School Principal Bill Suit, who, together, co-founded Pittsburgh Cure Sarcoma and who both died from the disease in 2013.

Laurie Rees is a freelance writer for Trib Total Media.

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