Volunteers walk, work to help stop pancreatic cancer

Agatha Bernardo?s mother, shown in photo she?s holding,

Agatha Bernardo’s mother, shown in photo she’s holding, died of pancreatic cancer. At her own wedding last year, Bernardo asked guests to donate money toward research, rather than buy gifts. (Aug 30, 2013) (Credit: Newsday / J. Conrad Williams, Jr.)

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Once a week from September through June, Kathy Glubiak heads to Bethpage to catalog research papers and mail requests for proposals for research grants to scientists around the world. It's all because of her father, who died of pancreatic cancer in 2005.

Richard Armenia, an information technology professional, also can be found in Bethpage, stuffing envelopes and helping organize mailings. His mother and a cousin died of pancreatic cancer, too.

Like thousands of other volunteers at The Lustgarten Foundation, their public mission to help eradicate the country's most lethal cancer is highly personal.

"I felt any little bit I can give back, ultimately it's helping the foundation and the scientists reach their goals," said Glubiak, 49, a part-time office manager who lives in Commack. Her father, Robert Richmond, was diagnosed in August 2005 and died that October at the age of 73. She has volunteered at Lustgarten since April 2009, where she also does data entry and files paperwork.

Since its inception in 1998, The Lustgarten Foundation -- a nonprofit that is the country's largest private foundation dedicated to funding pancreatic cancer research -- has devoted more than $65 million to more than 175 research projects at more than 50 medical and research centers worldwide. Last year the foundation, named after former Cablevision executive Marc Lustgarten, opened a research lab at the Cold Spring Harbor Laboratory that has yielded important discoveries about the disease, and also committed $24 million toward multiyear grants for research.

The battle stakes are high:

According to the foundation, more than 45,000 people will be diagnosed with pancreatic cancer this year and more than 38,000 others will die from it;

The five-year survival rate is just 6 percent if the disease is not caught in its earliest stages, which is often the case;

Pancreatic cancer has few early warning signs.

Armenia's relatives couldn't overcome those odds. His mother, Concetta, was 64 when she died in August 1990, six weeks after diagnosis. His cousin, Patricia Ehlers, was in her early 40s when she died in May 2010. Now the Middle Island resident wants to help others win their fight against the disease. He said he learned of the foundation after hearing former President Jimmy Carter, whose father, brother and two sisters died of the disease, talk about Lustgarten in a curePC public service announcement.

"I made some donations but . . . I wanted to volunteer at any level that would help the organization," he said.

Armenia, 57, was featured in another curePC PSA, and volunteered last year and in 2011 at the Lustgarten Foundation Pancreatic Cancer Research Walk, working from 7 a.m. to 1 p.m. setting up tents and tables at events at Jones Beach and in Manhattan, and selling hats and bracelets to raise funds for research.

"I was so impressed with the walk I wanted to get more deeply involved," he said. "Through these experiences I also met families with people in their 30s and 40s who appear to be healthy and in great physical condition who contract the disease. That's what's so overwhelming."

The pancreas is an organ of the digestive system located deep within the abdomen behind the stomach, making timely detection and treatment of the disease difficult. There are no early detection tests, and most of those with an advanced stage of pancreatic cancer die within a year of diagnosis.

Nearly 90 percent of patients are older than 55, and almost 68 percent are over 65, but younger people are also stricken. Marc Lustgarten was 52 when he died of pancreatic cancer in 1999.

The government provides only 2 percent of funding for research, a gap the foundation must fill to advance a cure.

Those at Lustgarten know well the challenges they face.

"Plenty of healthy people get this terrible disease with this terrible prognosis," said Kerri Kaplan, the foundation's executive director. "It affects just anybody." But, she added, "There is a lot of hope and enthusiasm in the scientific world . . . People raise money and we put all of it into research, and research starts to yield results."

The battle plan at The Lustgarten Foundation pairs a combination of heart, soul and devotion with an arsenal of research, awareness and fundraising.

When he was diagnosed in 1998, Lustgarten, a husband and father of two who at the time was chairman of Madison Square Garden and a Cablevision vice chairman, created the foundation with the support of Cablevision chairman Charles Dolan and chief executive James Dolan. Cablevision, which owns Newsday, underwrites all of the foundation's administrative costs so that 100 percent of donations goes directly to research.

That fact attracts a host of volunteers and donors, who raise thousands of dollars holding fashion shows, garage sales and other fundraisers, and walk for pledges in the annual Long Island walk, to be held this year Oct. 13 at Jones Beach. The walk is one of more than 40 the foundation organizes across the country. The walks began in 2001, and the Jones Beach event is the foundation's largest.

To help raise awareness of the disease, The Lustgarten Foundation publishes public service announcements in print and airs them on television and radio as part of its curePC campaign. The PSAs feature many prominent people who have responded to the foundation's outreach. Among them are actor Danny Aiello, who lost a son to pancreatic cancer; Marilyn Hewitt, whose husband Don, creator of the CBS news magazine "60 Minutes," died of the disease; and actor Matthew Modine, whose father and brother died of the disease. Actress Felicity Huffman and actor Denis Leary also have appeared in the PSAs.

According to foundation officials, the curePC PSAs are having an impact, citing phone calls from viewers of the campaign and a doubling in the number of participants in the walks, which now attract thousands of people, including more than 7,000 at the Long Island walk.

While The Lustgarten Foundation's volunteers, donors and researchers focus on their initiatives, the foundation is at work providing a range of services for those whose lives it hopes to save. Cancer patients and their family and friends can participate in Lustgarten's weekly "Interview With an Expert" series on Facebook, utilize the foundation's "Understanding Pancreatic Cancer" guide and get access to more resources on the Lustgarten website.

Last fall, the foundation unveiled another weapon in its fight against the disease with the opening of The Lustgarten Foundation Pancreatic Cancer Research Laboratory at the Cold Spring Harbor Laboratory. It focuses exclusively on pancreatic cancer research, and the lab's director, Dr. David Tuveson, added that pancreatic cancer science has advanced considerably since The Lustgarten Foundation became involved.

Research funded through the foundation has identified the genes that cause pancreatic cancer, said Tuveson, who is also research director for The Lustgarten Foundation. Researchers now know why the disease is resistant to drugs: getting them to penetrate the thick stromal blanket surrounding cancer cells is difficult.

"We're now poised to take this new knowledge forward into clinical trials, and we're also close to having new tests that will diagnose pancreatic cancer early, at a stage when it is surgically curable," Tuveson said. "With continued research funding, we will defeat this cancer."

A team of top scientists at six leading medical institutions comprises the foundation's Pancreatic Cancer Research Consortium: the Cold Spring Harbor Laboratory; the Dana-Farber Cancer Institute in affiliation with Harvard Medical School, both in Boston; the David H. Koch Institute for Integrative Cancer Research at the Massachusetts Institute of Technology; Johns Hopkins University School of Medicine in Baltimore; Memorial Sloan-Kettering Cancer Center in Manhattan; and the University of Texas MD Anderson Cancer Center.

Lustgarten officials say total donations vary yearly, but that the foundation's goal is to increase research funding. Its donors understand the value of research dollars, too.

Merrick resident Agatha Bernardo, 31, asked guests at her wedding last year to donate to Lustgarten rather than buy her wedding presents.

The August 2012 wedding, attended by 175 guests, was Bernardo's second ceremony. The first was in October 2011 at her mother Maria's bedside as she lay at home, dying from pancreatic cancer, which took her life the next day; she was 62. Bernardo, a teacher, honors her mother by keeping her maiden name and walking for a cure with "Maria's Tough Cookies," an homage to her mother's love of baking.

"I do it because I know 100 percent of the proceeds goes toward finding a cure," Bernardo said.

Paul Forman, 53, of Farmingville, hopes that comes in his lifetime. He has stage IV pancreatic cancer. He and a 50-member team of family and friends he dubbed "For Man-Kind" raised nearly $6,000 in last year's Long Island walk and $5,000 so far this year.

"Thank God for Lustgarten," Forman said. "The research needs money. One person can make a difference and a lot of people can make a tremendous difference. It's only a matter of time until they'll be able to target specific treatments. God willing, I'll be here to benefit."

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