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Julie Fleshman of the Pancreatic
Cancer Action Network shares her personal story—and tells
how her organization is focusing national attention on finding
a cure. |
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By Paula Kim
Julie Fleshman was hard at work on her law and MBA degrees at Santa Clara University
in the heart of California’s bustling, innovative Silicon Valley. With her
whole life ahead of her, she was looking forward to practicing law and starting
her own company. She proudly credits her entrepreneurial spirit to her father.
Ironically, just as Fleshman’s life was taking off, her father’s was
coming to a close. Several months after being diagnosed with pancreatic cancer,
Fleshman’s father died.
Like the rest of her family, Fleshman knew little about pancreatic cancer. "I
didn’t know what the pancreas was and I had never heard of anyone who had
the disease," she remembers. "My father’s doctor told him to go
home and get his affairs in order. There were no patient-based organizations,
no information, and no hope."
After her father’s diagnosis, Fleshman’s family searched frantically
for help and answers—and found only cold, hard statistics. "We felt
very alone," she says.
A New Door Opens
The day after her father passed away, Fleshman called Johns Hopkins University,
whose research facility is studying pancreatic cancer, and asked what she could
do to help. That’s when she learned about a newly formed nonprofit organization
called the Pancreatic Cancer Action Network (PanCAN). PanCAN, founded in 1999,
is the first national patient-based advocacy organization for the pancreatic
cancer community, which includes patients, families, medical researchers, and
physicians.
And so, Fleshman called PanCAN—and took a step that both changed the direction
of her career and honored her father at the same time. While volunteering for
a PanCAN event, she got an offer she couldn’t refuse: To join the organization
as the executive director and become its first full-time staff member.
After graduating with her dual law and MBA degrees, she set off for PanCAN’s
Los Angeles headquarters. "That was more than three years ago, and I never
looked back or doubted my decision," she says. "I know that PanCAN
is making a difference every day in the lives of pancreatic cancer patients.
If PanCAN had been around when my dad was diagnosed, it would have made a tremendous
difference to me and my family."
Focusing Awareness, Creating Hope
For Fleshman, making a difference for pancreatic cancer patients and their families
is priority No. 1. A great believer in passion and drive, Fleshman has encouraged
the PanCAN team to grow significantly in the past few years.
"We still have a long way to go, but there is information available today
for patients and their families that did not exist before," says the executive
director. "PanCAN has become a leading advocate for creating change for
this disease, and that’s very positive. We will continue to mobilize and
create awareness so that every patient who is diagnosed knows that there is a
place they can call for help. We will also continue to advocate for increased
research dollars."
Fleshman has also seen renewed spirit in the pancreatic cancer community at large,
and believes there are more significant changes ahead. "PanCAN has an attitude—it
stirs up excitement, awakens visionary ideals, and makes people feel a part of
something very important, something that is much greater than each of us as individuals," she
says. "I believe my job at PanCAN is to keep that energy alive. I feel very
lucky that I have the opportunity to be a part of this organization. PanCAN is
an amazing place and I am very honored to be a part of this team."
A Source of Knowledge and Hope
PanCAN offers a variety of resources on many topics relating to pancreatic cancer,
says Fleshman, including: frequently asked questions, clinical trials, cancer
health centers, support groups, diet and nutrition questions, pain management,
community events, insurance and job-related issues, and many others.
One particularly noteworthy program that has been very helpful to patients and
their families is PanCAN’s Patient and Liaison Services (PALS). This innovative
program for patients integrates the clinical trial process into extensive patient
information and guidance. PALS assists patients and caregivers in learning about
and understanding their options so they can discuss them with their medical care
team and loved ones.
Friendly, trained PALS associates are available to assist patients on a one-on-one
basis Monday through Friday from 9 a.m. to 5 p.m. PST. The PALS program is offered
at no cost to callers, and is made possible through the generosity of PanCAN
supporters. PALS associates are available toll-free at 877-2-PANCAN (877-272-6226),
or via e-mail at medinfo@pancan.org.
"PALS gives people the information they need to make sense of their diagnosis
and make informed decisions about surgery, treatment options, and side effects," explains
Fleshman.
Michelle Muething, PanCAN’s director of PALS and scientific affairs, says, "This
new program encourages patients to learn all they can about pancreatic cancer
to make informed decisions. Our goal is to help patients and to offer hope. We
want them to know we’re here and ready to answer questions and suggest resources."
In addition, volunteers across the country help PanCAN spread the message and
get the word out to the patients that there are services available to help them.
Volunteers also create awareness in their communities about the disease by wearing
a purple ribbon, distributing brochures to medical centers, institutions, oncologists
offices, and other places where patients may visit, attending a PanCAN event,
or joining a Team Hope affiliate.
Sending a Stronger Message
PanCAN also recently testified before the subcommittee on Labor, Health and Human
Services, Education and Related Agencies of the U.S. House of Representatives
Committee on Appropriations. In the testimony, PanCAN said that only 10 fully
funded researchers exist nationwide who are 100% dedicated to pancreatic cancer,
and there are limited funding opportunities for researchers who want to study
the disease.
PanCAN outlined opportunities for the federal government to take action to facilitate
progress in combating the disease, including providing adequate funding and creating
ways to attract early and experienced investigators to the field of pancreatic
cancer.
"It’s amazing how many people have been touched by this disease and
want to do something to make a difference," says Fleshman.
A Weekend of Hope
Another example of PanCAN’s efforts to make a difference is the Pancreatic
Cancer Symposium, an event to educate and create awareness. The symposium takes
place Nov. 7 at the Beverly Hilton in Beverly Hills.
The all-day event features presentations on such topics as: pancreatic cancer
treatments, federal agenda, pain management, diagnosis/management tools, research,
nutrition, genetics, and advocacy efforts. On Nov. 8, a caregiver and survivor
networking session will take place at 8:30 a.m. The symposium and networking
session are provided at no cost.
Those interested in attending can call Jennifer Zieger at 877-272-6226
or e-mail jzieger@pancan.org.
PanCAN’s annual black tie gala "An Evening With the Stars," taking
place on Nov. 8, will feature dinner, entertainment, and a silent auction. To
receive details and ticket information, call the PanCAN office at 877-272-6226.
For more information on PanCAN, the Pancreatic Cancer Symposium or the Patient
and Liaison Services program, visit www.pancan.org,
call 877-272-6226, or e-mail info@pancan.org.
PanCAN’s national headquarters are located in El Segundo, California. |
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