When Serina Parson's mother, Catherine, was diagnosed with pancreatic cancer in May 2003 there was almost nothing by way of resources and support.
The then 20-year-old hunted for information, but found little. What she did find was mostly all American-based.
About a year ago the Marystown native, who now lives in Halifax, Nova Scotia, was driving down the road in her car when she heard a fundraising promo on the radio for Craig's Cause Pancreatic Cancer Society.
Her ears perked at the revelation someone had finally started a pancreatic cancer organization for Canadians. She tracked down a website, and quickly fired off an e-mail to founder Stefanie Condon-Oldreive.
Ms. Parsons is now a member a member of the board of directors, volunteers quite avidly with fundraising events and generally helps create awareness.
She acknowledged people from all across the country have contacted the Nova Scotia-based organization, which Ms. Condon-Oldreive initiated three years ago in memory of her father, Craig Schurman Condon. Craig passed away in 2004 at age 63, two months after he had been diagnosed with the disease.
The hope is to eventually go national and that's where Katie's Cause - the recently launched Newfoundland and Labrador chapter of the organization named in Serina mother's honour - figures into the equation.
DEADLY DISEASE
Marystown resident Allison Hannam - Catherine's niece and Serina's cousin - is the chapter's provincial representative.
"Really, we're just trying to do some fundraising, patient advocacy and support for pancreatic cancer in this province, because when Aunt Kate was diagnosed there wasn't anywhere she could turn to. There was no real support in this particular area."
The disease has received a higher profile in the news recently, mainly in connection with the passing of Hollywood actor Patrick Swayze, who succumbed to the disease this month, at age 57, after a year-and-a-half-long battle.
That was longer than most people - the vast majority of pancreatic cancer patients do not live to see their next birthday.
The statistics for pancreatic cancer, the fourth leading cause of cancer mortality in the country, are undeniably grim. Less than 20 per cent of people diagnosed are alive after one year, and fewer than five per cent after five years.
Canadian Cancer Society statistics for 2009 indicate there will be an estimated 3,900 new cases of pancreatic cancer in Canada this year and 3,850 deaths.
A nurse at the Burin Peninsula Health Care Centre, Ms. Hannam's involvement in the provincial chapter stems from both personal and professional reasons. She acknowledged her aunt's illness was difficult.
"It's the worst thing I've ever experience."
According to her daughter, Catherine Parsons - Katie, as those who knew her best called her - fought a valiant fight against the disease.
She underwent and recovered favourably from the radical Whiffle procedure. The only available treatment offering a possible cure, it involves removing the head of the pancreas, the duodenum, part of the stomach, the gall bladder, lymph nodes and nearby tissues, with the potential of chemotherapy and radiation afterwards.
Aug. 11, 2003, family and friends gathered to celebrate her 50th birthday, but the joy was short lived.
Described as an "amazing, resilient, vibrant woman," who had raised Ms. Parsons and her brother alone, she passed away a little over two months later.
"It was two weeks before my 21st birthday that I lost my mother. What can I say?
"She was my best friend and my mother. She wasn't the type of parent who you couldn't confide in. I could talk to her about everything."
UNDERFUNDED
Ms. Parsons indicated financial support for pancreatic cancer research - at less than one per cent of total funding - is among the lowest for all types of cancer.
"If you ask me, that's a discrepancy. How can one of the deadliest forms of cancer be one of the least funded? That's what we're aiming to change."
She noted Craig's Cause has raised $100,000 for research funding in the three years since it was formed.
The organization is entirely volunteer-based and 100 per cent of all funding goes to research carried out at the Queen Elizabeth II Health Sciences Centre in Halifax and at Mount Sinai Hospital in Toronto, Ontario. She indicated much of the funding is being used to seek out methods of early detection.
Another major accomplishment, which just happened recently, was a successful e-mail campaign to have the Canadian Cancer Society officially recognize November as 'Pancreatic Cancer Awareness Month'.
Despite strong growth, Craig's Cause is still largely a grassroots affair, with monthly meetings occurring in Serina's kitchen. Those who are in charge look to another thriving group started two decades ago in a similar fashion.
"Right now, we're just aiming to see this organization be what the Canadian Breast Cancer Foundation is."
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