November 18, 1999
Spotlighting a Neglected Disease
Acosta promptly jumped on the Internet to learn about the disease. What she discovered was discouraging. Symptoms generally do not occur until the disease is in advanced stages; life expectancy is three- to six-months. According to the American Cancer Society, little is known about the causes and prevention of pancreatic cancer, which will claim close to 29,000 lives this year in the U.S.
While searching the Internet, Acosta found herself on the Johns Hopkins Medical Institute's website, which included a posting board for pancreatic cancer patients and family members. She soon became part of a geographically far-flung support group that shared information, frustrations and grief. She continued to participate in the chat room, even after her mother passed away, six months after being diagnosed.
One thing Acosta learned was that Ashkenazic Jews, such as Landon himself, are at greater risk of getting this cancer. Carriers of the BRCA2 cancer gene, inherited by 1 percent of all Askenazi Jews, have a 10 percent chance of developing pancreatic cancer.
From the moment Acosta started learning about pancreatic cancer, she couldn't help but feel that too little attention was focused on the disease, which is the fourth highest cause of cancer deaths in the U.S. among both men and women. Part of the reason, she surmised, is that it "hits so hard and fast, those left behind are left speechless."
She noticed that other diseases seemed to get attention -- and ultimately, research funding -- through affiliation with high-profile celebrities. She did some research and found that a number of celebrities, in addition to Landon -- Henry Mancini, Donna Reed and Juliet Prowse, to name a few -- had died of pancreatic cancer. She started contacting celebrity families and others to see if they would get involved in raising the profile of this seemingly neglected disease.
Soon, she had a growing list of people willing to lend their names to her cause, including Michael Landon, Jr., Tommy Lee Jones, Patti LaBelle, Samuel L. Jackson and Nancy Wilson.
With those names to work with, Acosta and her nationwide network of Internet contacts found themselves planning a Beverly Hills dinner to raise awareness and research funding for pancreatic cancer. Last November, they held an "Evening With the Stars," which attracted 450 guests and grossed $165,000.
The group gave the money to Dr. Michael Goggins of Johns Hopkins, who, through his laboratory, was concentrating on early detection of pancreatic cancer. Early detection can increase survival rates for pancreatic cancer by up to 40 percent, but there are currently no effective tests available.
Pleased with the dinner's results, Acosta wanted to broaden her group's focus. She formalized the Pancreatic Cancer Action Network (PanCAN) as an advocacy organization, along with co-founders Terry Lierman and Paula Simper. Acosta serves as the organization's president while maintaining a full-time job as vice president of a metal recycling company.
For this years successful dinner, which was held Nov. 7 at the Beverly Hilton Hotel, Acosta had a secret weapon in organizing: an enthusiastic volunteer named Stephanie Davis.
An attorney and mother of two from Sherman Oaks, Davis, like Acosta, was devastated when her mother, Helen Pollak, was diagnosed with pancreatic cancer in March of this year.
"I never knew what a pancreas was," says Davis, who, also like Acosta, promptly got on the Internet to learn more about the disease.
Davis's search, too, led her to the Johns Hopkins website, where she found a link to PanCAN. She e-mailed the organization to ask for help, and promptly got a response from Acosta.
Soon, said Davis, she had found her "mission." She has helped organize fundraisers, review contracts between PanCAN and celebrities who will be appearing in public service announcements for the organization, and answer the group's phone line when the executive director is unavailable.
While Davis waits for these developments to come to fruition, she will continue to fight for PanCAN's mission and hope for the best for her mother.
"If I'm not doing all I can to make people aware of this disease," says Davis, "I'm not doing her justice."
For more information , call PanCan at: (877) 2-PANCAN or visit www.pancan.org