BUFFALO, N.Y. — Thirty years later, Anne Gioia can't fight back the tears when she starts to tell the story.
How could she?
It was the summer of 1989 when the Gioia family was on vacation just across the border in Port Colborne, Ontario. She says she remembers the moment vividly when her four-year-old daughter Katherine told her something was wrong.
How could she not?
"Happy, heathy four-year-old... summertime says... I don't feel good... my back hurts."
It was the beginning of a journey that led to the diagnosis of a rare form of cancer. Synovial Sarcoma of the chest wall. It accounts for less than one-percent of all cancers.
After undergoing rounds of chemotherapy and other treatments, both at Roswell Park and at Johns Hopkins, Katherine lost her battle at the age of five.
"I think life happens in a way that you woudn't ever want to write the script, and you'd never want to play the part in a movie."
Anne and her sister-in-law Donna Gioia moved forward by founding what has come to be known as the Roswell Park Alliance Foundation. It has raised close to $400 million over three decades to benefit research and patient care at Roswell Park. The Ride for Roswell is the largest fundraising event for the Alliance. It has raised more than $50 million over the last 24 years.
"What made me form it was I knew cancer was here to stay, but that changes were coming... that people that were going to follow in our path after a diagnosis were going to need all of the resources that they could possibly garner."
The research the Alliance funds have supported has led to numerous breakthroughs at the leading edge of the fight. A recent breakthrough has been made in Katherine Gioia's memory.
Dr. Carl Morrison and Dr. Eugene Yu have discovered a genetic mutation called ADAM17, that fuels the spread of the rare sarcoma that took Katherine Gioia's life. The findings are still pre-clinical, but Dr. Morrison says they are encouraging. "We can save these patients" if they can develop a targeted drug that can limit the spread of the cancer.
Research that for Anne Gioia, her husband Richard, and entire family could very well come full circle.
"Katherine taught me a lot, and I think the biggest lesson was if you can do something... do it. It makes me feel absolutely wonderful to know that the pain and suffering that people go through with chemotherapy and radiation... that there will be an easier path. That's the whole reason the Alliance was started."