By Chris Michlewicz
Maureen Shul was riding high as the first mayor of Castle Pines when her life came crashing down.
It wasn’t a political scandal that forever altered her career path and, ultimately, the course of her life. It was the consecutive losses of two of her staunchest supporters: her brother and mother. And their deaths were attributed to the same illness.
Shul admits that she didn’t even know what a pancreas was, let alone her unfamiliarity with the aggressive nature of the cancer that infiltrates the internal organ. Her family does not have a history of cancer, and there were no warning signs before her brother, Victor, was diagnosed in 2005.
His was something of a rare story; he battled for four years before passing away in 2009. Others are taken suddenly, as was the case with Shul’s mother, who survived only three months after her August 2009 diagnosis.
“The losses were so profound and so great, I had to steady myself and learn how to keep going,” she said.
Shul coped, in part, by joining national efforts to raise money for pancreatic cancer research. Then she learned that intensive research was occurring in the Denver area, and immediately shifted her focus. She created Wings of Hope for Pancreatic Cancer Research , her own nonprofit foundation, and in February partnered with those Denver researchers.
Doctors and scientists at the University of Colorado Cancer Center at the Anschutz Medical Campus are engaged in multi-pronged studies to try and determine the cause of pancreatic cancer, the most effective treatment methods and ways to detect it much earlier.
The first fundraiser for Wings of Hope, scheduled for April 25 at The Wildlife Experience, is nearly sold out, reflecting the high number of people in Douglas County with a great interest in stopping the disease’s advance. The best part is that Shul and the nonprofit’s board of directors will have direct discussion with researchers to determine the best use of the funds that are raised.
“Of all of the things I’ve ever been involved with, nothing has been more meaningful or significant as starting this foundation,” Shul said.
The charity event will not only highlight advances in research and raise awareness, it will feature Shul’s brother, Brian, a bestselling author and former SR-71 pilot, as the keynote speaker. Brian Shul will relate his harrowing story of survival after being shot down over Vietnam. His family received notification that he died, and it wasn’t until 48 hours later that they learned he was alive.
When asked what her brother and mother would think about her actions in the wake of their untimely deaths, Shul says she hopes they would be proud
“We’re making a contribution in a way that is honoring them as well as helping me get through all of this,” she said. “I’m doing what I’m supposed to be doing. I couldn’t just walk away from it.”
AURORA, Colo. ( Jan. 29, 2012) - University of Colorado Cancer Center and Wings of Hope for Pancreatic Cancer Research have joined forces to raise awareness about pancreatic cancer and boost funding for pancreatic cancer research and related CU Cancer Center programs.
“We are happy to partner with Wings of Hope in our efforts to find effective therapies for those with pancreatic cancer,” says Colin Weekes, MD, PhD, medical oncologist and member of the CU Cancer Center.
Pancreatic cancer is the 4th leading cause of cancer death in the United States and is projected to rise to the 2nd leading cause by 2020. It is estimated that 43,000 Americans are diagnosed each year with pancreatic cancer, 74 percent will not survive longer than 12 months.
“In terms of the magnitude of human suffering it causes, pancreatic cancer is underfunded and this collaboration will help us address this” says Dan Theodorescu, MD, PhD, Director of the CU Cancer Center.
“There is no broadly accepted early detection method for pancreatic cancer and effective treatments are limited. But we hope to improve the outlook for people with pancreatic cancer by discovering and developing biologically targeted therapies,” Weekes says.
Wings of Hope was founded in February of 2012 by Maureen Shul, the former mayor of Castle Pines, after she lost two family members to pancreatic cancer. Wings of Hope is dedicated to supporting research and clinical care at CU Cancer Center.
“The pancreatic cancer research and treatment taking place at CU Cancer Center is second to none and it is a privilege to have Wings of Hope a focused part of the effort to raise awareness as well as funding for this incredibly important work,” says Shul.
After being passed by Congress in December 2012, the RECALCITRANT CANCER RESEARCH ACT was signed into law by President Obama on January 3, 2013.
This legislation, attached to the National Defense Authorization Act, requires the National Cancer Institute (NCI) to examine its current research efforts on cancers with very low survival rates and work to develop early detection methods and better treatment options to help improve outcomes for those diagnosed with the most deadly forms of cancer, including pancreatic and lung cancer.
As the first legislation to specifically include and focus on pancreatic cancer, the NCI will be required to establish scientific frameworks for pancreatic and other deadly cancers including rigorous evaluations of existing research efforts and the progress being made in the prevention, detection, diagnosis and treatment of these deadly cancers.
Realizing the critical importance of this legislation in the advancement of specific and focused research, WINGS OF HOPE for PANCREATIC CANCER RESEARCH is dedicated to raising awareness and funding for the cutting edge research, clinical trials and treatments currently ongoing at the University of Colorado Cancer Center’s Pancreatic Cancer Research Program.
Below is a commentary written by Maureen Shul for the Denver Post on 11/4/2012.
November is National Pancreatic Cancer Awareness Month. For most, that may be the only time they hear about pancreatic cancer. For too many others, it will be one more heart breaking reminder of a devastating disease that family and friends have been lost to.
When my brother was diagnosed with pancreatic cancer, I readily admit I had no knowledge of what a pancreas was, what it did and what it meant to have cancer there. No amount of research softened the statistics. Only two out of ten people with pancreatic cancer survive beyond one year after being diagnosed, and fewer than six percent will survive beyond five years. That survival rate has not changed in the last 40 years.
I expanded my research to the most well known medical institutions throughout the country, all confirming what I knew but did not want to believe. Pancreatic cancer has no known cause, no early detection methods, no effective treatments and no cure. By the time someone is diagnosed, it is almost always too late for any type of effective treatment.
My brother was as strong, healthy and courageous as they come, but he was no match for a disease that came with no warning and remained relentless in its horrific grasp. His suffering and fight lasted four years.
Three months after losing my brother, my mother was diagnosed with pancreatic cancer. She died ninety devastating days later.
While in the midst of grief from such profound losses, I met one of the physicians from the University of Colorado Cancer Center specializing in pancreatic cancer. It was a revelation to learn that the University of Colorado’s Pancreatic Cancer Research Program boasts and continues to attract an elite group of physicians specializing in the research and treatment of pancreatic cancer. What sets their work apart from others is their multi-disciplinary approach to patient treatment, exemplified by the personalized and focused treatment plan developed for each patient by a team of physicians representing the disciplines of medical oncology, surgical oncology, radiation oncology, pathology, radiology and interventional gastroenterology.
Their goal is nothing short of developing a leading national academic pancreatic cancer research program here at the University of Colorado Anschutz Medical Campus, and they are well on their way. Cutting edge research, access to the most advanced treatments, highest levels of patient care and extensive clinical trials are all taking place right now and right here.
To help raise awareness for the focused ongoing efforts at the University of Colorado Cancer Center’s Pancreatic Cancer Research Program, the Wings of Hope for Pancreatic Cancer Research Foundation was formed earlier this year.
Pancreatic cancer is currently the 4th leading cause of cancer death in the United States. By 2020, it is anticipated pancreatic cancer will become the 2nd leading cause of cancer death in the United States. We have the opportunity right now to help change that projection by supporting the efforts and strides being made in our own back yard.
A leading medical institution in Texas recently announced a “moon shot” effort against eight specific forms of cancer, akin to the all out effort for landing a man on the moon 50 years ago. Pancreatic cancer was not included among the eight cancers. The time is now for pancreatic cancer to be brought out into the open, to where it will no longer be the most underfunded and least studied among the major cancers.
We can be stunned by statistics and numbed by grief, but we must not stand by while this disease expands its devastating reach.
The dedicated physicians at the University of Colorado Cancer Center’s Pancreatic Cancer Research Program are not giving up on their goal to have their program second to none in the fight against pancreatic cancer.
And neither should we.
Maureen A. Shul, former mayor of Castle Pines, is founder of Wings of Hope for Pancreatic Cancer Research.
Below is a commentary written by Maureen Shul for the Denver Post on 10/08/2011.
Pancreatic cancer was in the news this week for all the reasons we dread most.
Scientist Ralph Steinman died from pancreatic cancer just three days before the announcement was made that he had won the Nobel Prize for medicine. A pioneer in understanding how cells fight disease, Steinman was using his own research and discoveries in his battle with pancreatic cancer.
The passing of Steve Jobs from a rare form of pancreatic cancer (pancreatic neuroendocrine tumor) devastated everyone who believed that if anyone could beat the odds, he could. That he fought for nearly eight years upon being diagnosed with this rare form of cancer and still managed to remain at the forefront of altering our culture and technology is a testament to the fight he endured.
These two most recent public deaths involving pancreatic cancer are a stark reminder of the severity of this deadly disease.
It becomes easy to understand why races and walks comprised of pancreatic cancer survivors who beat the disease will not take place anytime soon.
The five-year survival rate for pancreatic cancer is only 6 percent. For 40 years, this survival rate has remained in the single digits, despite the increase in those being diagnosed, and despite the fact that it is the fourth-leading cause of cancer death. This year, 44,000 Americans will be diagnosed with pancreatic cancer. Of those, close to 38,000 will die from the disease.
There are no conclusive tests for early diagnosis, there are no effective treatments, and there is no cure.
Pancreatic cancer is the most underfunded, under-recognized and least studied of all major cancer killers, receiving only 2 percent of the National Cancer Institute's research budget. That scientist Steinman was using his own research in his battle with pancreatic cancer provides heartbreaking insight into how slim the arsenal is in fighting this disease. As breast cancer was years ago, pancreatic cancer remains in the shadows when it comes to awareness and research funding, a fact that cuts through the hearts of those who have lost loved ones to this horrific disease
While legislation is pending before Congress that will implement better targeted research, the national Pancreatic Cancer Action Network continues investing in a research strategy that will advance early diagnostics, more effective treatments and increase chances of survival.
In mid-2009, I lost my brother to pancreatic cancer after his four-year battle with a disease that proved relentless in its tortuous power. Several months after he died, my mother was diagnosed with pancreatic cancer and passed away three months later.
After losses this profound and close to each other, it is almost as if you must learn how to walk and breathe all over again. But there comes a moment in the midst of grief where you are compelled to do something, for the loved ones lost, and for those who have been, who are or who will be forced on that same dark journey.
In honor of my mother and brother, I am organizing a benefit to help raise awareness and increased research funding for pancreatic cancer. The Wings of Hope benefit will be held Oct. 22 at Wings Over The Rockies Air & Space Museum. For more information, go to pancan.org/wingsofhope.
As pancreatic cancer continues its steady and shattering assault on families, we must make it a national priority and give patients a fighting chance. The statistics can and must change.
There come events in our lives that demand of us more than being a bystander in the bleachers doing nothing. This is that moment, for all of us.
Below is a commentary written by Melanie Avner for the Denver Post on 11/08/2011.
When Carnegie Mellon Professor Randy Pausch gave his unforgettable "Last Lecture," and publicly shared his battle with pancreatic cancer, my heart ached for him, his wife and his three beautiful children. I knew the statistics, and I knew pancreatic cancer was horrendous, scary and devastating. What I didn't know then — what none of us knew — was that the very same cancer was spreading in my mother's body.
One week before my mother received the news that she had a mass on her pancreas, she started to feel unwell, just not herself. But what puzzled and alarmed her most was the severe itching in her hands and feet. She also mentioned the strange color of her urine.
Prior to these symptoms, which came on suddenly, she felt fine. In fact, she was the picture of health. My mother, who was 63, ate right, exercised and always knew the latest cancer research and findings. She took care of herself.
She, too, knew about pancreatic cancer long before it changed her life. Though she no longer worked in a hospital, my mother was a registered nurse. So when she got that call on April 17 with the results of her CT scan, the first words that came to her mind were: "death sentence."
My mother had that reaction because the statistics are grim. According to the Pancreatic Cancer Action Network, an advocacy group that works to raise funds and awareness to fight pancreatic cancer, the five-year survival rate for pancreatic cancer is less than 5 percent, making it the most lethal cancer in the United States. In most cases — nearly 90 percent — the disease has already metastasized before it is diagnosed, ruling out surgery, which is the best hope for long-term control of the disease.
By the time my mother exhibited symptoms, the cancer had already spread to her liver. Surgery to remove the tumor was not an option. Just two weeks after she began to feel ill, my mother was diagnosed with stage IV pancreatic cancer and told she likely had less than a year to live.
Pancreatic cancer is the fourth-leading cause of cancer death in the United States. The Pancreatic Cancer Action Network reports that in 2008, more than 38,000 Americans will be diagnosed with pancreatic cancer and nearly 34,000 will die. The survival rate has remained largely unchanged in the last 30 years.
Pancreatic cancer research constitutes less than 2 percent of the National Cancer Institute's federal research funding — a figure far too low given the severity of the disease. From a scientific research perspective, pancreatic cancer is where breast cancer was in the 1930s. Advancing pancreatic cancer research into the 21st century is dependent upon the increase of basic scientific research.
November is Pancreatic Cancer Awareness Month. I wish my mother could have lived to see that such a month even existed. She died on Aug. 20, just four months after her diagnosis. Four months. Four months from diagnosis to death. That is pancreatic cancer.
It would have been understandable for me to say that I never wanted to see, speak or hear about pancreatic cancer again after the devastation and pain that it caused my family. And I'm sure many others have felt exactly the same. That is probably what happens far too often.
But we cannot continue to turn our backs on pancreatic cancer. As terrifying as it is to face straight on, we must. We must demand more funding for research, better screening and detection, improved treatments, and increased education and awareness. The Pancreatic Cancer Action Network has made significant strides, but unfortunately, there is a long road ahead.
As Pausch said several months before he died, "Pancreatic cancer is disorienting, it's frightening, it's horrifying. The way you beat it is you give a lot of smart people the funding to do their job." I hope you'll join me in doing just that. You'll be creating hope for those courageous individuals who are living with pancreatic cancer and honoring those we have lost to this terrible disease.
JOIN THE EFFORT…BE A PART OF THE POSSIBLE, BE THE HOPE.