MERIDEN — About a dozen people stood on stage in Hubbard Park facing a purple clad crowd. Each person gave their name and a length of time.
Three and a half years. Seven years. Seven months. Four years. Six months. A decade.
That’s how long each person has survived since being diagnosed with pancreatic cancer, a disease with a survival rate of 9 percent.
As each person spoke, cheers flowed forth from the crowd. When one of the survivors, an older woman, left the stage, a young girl around 10 years old leapt into her arms. A young woman who had just been diagnosed told the crowd, “I am not technically a survivor yet, but I plan on kicking butt.”
With the stakes so high, hundreds of people got together Saturday morning at the Pancreatic Cancer Action Network’s PurpleStride event to bring awareness to the disease and to the network. Participants ran and jogged around the park, banding together in teams to raise money.
Kim Levesque, Connecticut affiliate chair for the Pancreatic Cancer Action Network, lost her father Paul Lussier in May 2015. He was diagnosed with the disease in February, and given only a couple of weeks to live. He had no warning, no symptoms. After that, his daughter Kim found herself needing to get involved.
“I didn't know about the organization when Dad got diagnosed,” Levesque said.
Since then, she’s been one of the affiliate’s leading fundraisers, bringing in over $25,000 to help combat the illness. Because of the merciless nature of the disease, the development of clinical trials, new kinds of testing, and early diagnosis screening are necessary, she said.
The Pancreatic Cancer Action Network hopes to increase the survival rate to 12 percent by 2020, Levesque said.
“We want to let people know that there are resources available. That they are not alone when they get diagnosed,” she said.
Getting attention for the illness is not easy, said Ken Carr, a three year survivor of two individual instances of pancreatic cancer, a situation he likened to being hit by lightning twice.
“It’s been tough,” said Carr, a New Milford resident.
But that hasn't stopped Carr from being a vocal advocate for increased pancreatic cancer research funding. About 50,000 people get diagnosed with the disease a year. The relative rarity combined with its high mortality rate makes it a tough sell for the federal government to spend its research dollars.
Simply put, not enough people survive to create the kind of lobbying force needed to make changes at the national level. Carr is doing his part. He’s headed to Washington D.C. with about 500 other members of the Pancreatic Cancer Action Network in June to lobby his congressional delegation for money to be sent to the National Institutes of Health and the National Cancer Institute.
“We need funding. We desperately need funding,” Carr plans to tell the Connecticut senators and representatives.
Most fights concerning this kind of cancer happen at home, not in Washington.
Nick Coscia, an 81-year-old Waterbury resident, flipped through his phone. He had a beautiful photo of Karen, his wife of 58 years, that he wanted to share. He’s wearing a suit and she looks radiant in a black dress. She was diagnosed with stage four pancreatic cancer in October. He spends his days going with her to treatments in Philadelphia and New York, a combination of traditional chemotherapy and alternative therapies.
They graduated from the same high school class in Waterbury, but didn't know each other. It wasn’t until a couple years later – and considerable courting on Nick’s part – they finally got married.
Describing their situation as hard is an understatement. Their son John has been a devoted caregiver for his mom, and Coscia is quick to highlight the importance of all family in a situation like this. He will do what it takes to make sure Karen will get the care she needs.
“We’ve been fighting the fight...We are going to beat it,” Coscia said.
A hardy few ran the race Saturday. The bulk of the people came strolling in about an hour after it started. They are loved ones, the people left behind to tell their family member’s story.
Shortly before the race, Glastonbury resident Danielle Courtemanche held a large sign with a photo of a smiling man. Wayne’s Tigers, the sign read. Her father Wayne Courtemanche was diagnosed in January 2018. He died in August of that year.
“We saw the struggle he went through. It’s not fair to anyone to go through that struggle and pain. That’s why it is so important for them to find a cure,” she said.
For more information about the Pancreatic Cancer Action Network, visit pancan.org.