LUNG CANCER VOICE FA L L ‘ 1 4 I S S U E
Participants of the 2014 Dallas/Fort Worth Free to Breathe Run/Walk
LETTER FROM THE PRESIDENT If you’ve been following this column in the Free to Breathe/National Lung Cancer Partnership newsletters, you already know that we’ve set an ambitious goal to double lung cancer survival by 2022. We’ve been continuing to strengthen our efforts to turn this vision into a reality by recently making two significant changes. You may already know that we’ve officially changed our name to Free to Breathe earlier this year. We have also refocused our programs to impact the national lung cancer movement in more ways than ever before. Today, it’s my pleasure to share – in this column and throughout this newsletter – a few more details about the evolution of our organization, its programmatic focus, and the stories of the people whose lives are changed by these programs and how you make this impact possible. A name can tell a lot about an organization. What’s in our new name? The Free to Breathe name
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embodies hope, courage and empowerment. It also symbolizes strength -- something we see and are inspired by every single day in all of you who dedicate so much of your time, talent and treasures to our organization. Our new name creates a single point of focus and captures our belief that every person with lung cancer deserves to be free to breathe.
INSIDE
In addition to our name change, we needed to evaluate and refocus our research and programmatic efforts in order to make reaching our goals attainable. Our Board, staff and scientific advisors realized the need to identify the most effective ways to quickly make a meaningful impact on survival and we began by examining our research grant programs.
EVEREST 05 CONQUERING A Survivor Finds Hope In Clinical Trials
Since 2005, our Young Investigator Research Grant program has been encouraging promising young scientists to enter the lung cancer research field with the ultimate goal of developing new treatments. The program is working; our ranks are growing.
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FROM THE PRESIDENT, CONT. 02 LETTER Joan H. Schiller, MD: New Directions WITH INFORMATION 03 ARMED Local Event Chair, Lisa Steil, Finds Hope FUNDING TO INCREASE SURVIVAL 04 NEW Free to Breathe Research Programs
DOWN YOUR RAZORS 06 PUT Beards for Hope Fundraiser Ramps Up STAFF JOIN NATIONAL WALK 07 NATIONAL Staff Member Organizes Fundraiser
we are
LETTER FROM THE PRESIDENT, cont. When we began this program eight years ago, only seven researchers applied for funding; more recently, up to 93 researchers applied. This increase in young researchers with novel ideas bodes well for the future of lung cancer research. Treatment options for lung cancer patients are more numerous than ever before with more researchers choosing to enter this field, thanks in part to grant programs like ours. Because of our initial support, several of our grant winners’ projects have progressed to clinical trials, allowing these treatments to be directly available to eligible patients participating in the trials.
their ideas and translate these ideas into treatments for patients, regardless of the stage at which they’re diagnosed. Our new grants will help ensure that people like Lisa Steil’s father (see story on p.3) have more priceless time to cherish with his loved ones. They will help ensure that people like Marty Kallish (see story on p. 5), who was diagnosed with stage 4 lung cancer back in 2008, will be able to climb – and move – mountains.
this “IF WE CAN STOP THE SPREAD OF Throughout issue of the Lung LUNG CANCER, WE CAN STOP THE Cancer Voice, DISEASE FROM CLAIMING THE through the stories of families LIVES OF PEOPLE WE LOVE.” and individuals
As we look to the future, we will focus solely on research projects that will prevent or stop metastasis, the spread of the disease. One of the greatest challenges in treating lung cancer is preventing it from spreading to other parts of the body and keeping cancer that has already spread at bay. If we can stop the spread of lung cancer, we can stop the disease from claiming the lives of people we love.
whose lives have been changed by lung cancer, you’ll learn why Free to Breathe is dedicated to doubling survival, how we are achieving that goal and how you can be an important part of the movement. Together, let’s unite around the common goal that lung cancer survival should be the expectation, not the exception. We look forward to sharing this journey with you.
BOARD OF DIRECTORS PRESIDENT
Joan H. Schiller, MD University of Texas Southwestern Medical Center
VICE PRESIDENT
Lorraine C. Pastore, MBA ReagentUSA
SECRETARY
Sharon Munger Lung Cancer Survivor
TREASURER
Peter Fry Guggenheim Partners
Kathy S. Albain, MD, FACP Cardinal Bernardin Cancer Center, Loyola University Chicago Charles Florsheim, JD Lung Cancer Survivor Cantey Hanger LLP Jean Kamla, BSN, RN Christus St. Patrick’s Hospital Willie Mount Former Louisiana State Senator Charles M. Rudin, MD, PhD Memorial Sloan-Kettering Cancer Center Jill M. Siegfried, PhD University of Minnesota Medical School David R. Spigel, MD Sarah Cannon Research Institute, Tennessee Oncology Eric Thompson, JD The Law Offices of Eric W. Thompson PC Antoinette J. Wozniak, MD Karmanos Cancer Institute, Wayne State University
Joan H. Schiller, MD Chief, Division of Hematology and Oncology
In order to have the greatest impact in stopping the spread of lung cancer and realize significant gains in survival, our expert scientific advisors told us funding larger projects is crucial. That’s why we’re announcing a change in our research grant program. These grants will be three-year, $600,000 awards, allowing recipients the significant funding needed to develop
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Deputy Director, Simmons Comprehensive Cancer Center Andrea L. Simmons Distinguished Chair in Cancer Research University of Texas Southwestern Medical Center
VISIT freetobreathe.org for more information. CHECK OUT the feature story on p. 4 detailing our evolved programmatic direction!
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ARMED WITH INFORMATION, DAUGHTER HAS OVER 3 MORE YEARS WITH FATHER Lisa Steil, the Madison Free to Breathe local event chair, shares her story on how lung cancer has impacted her life, and where she found empowerment and hope amidst such trying times.
IN LISA’S WORDS In 2010, my father noticed a lump above his collarbone. After a visit to the doctor that turned into a biopsy and a few other tests, it was determined that the “lump” was a swollen lymph node. The reason the node was swollen was because my father had lung cancer, and it was spreading. His doctor was compassionate. He had been my dad’s doctor for a long time, and I think he was truly sad. But he couldn’t give us very much information. The most he could tell us was that he guessed it was stage 4 because of the fact that it had already spread, but we would need to meet with an oncologist to discuss it further.
given. And what information were we given? We walked away with a lung cancer diagnosis, and knowledge that it was possibly stage 4. Cancer is scary enough, but stage 4? Seriously? To me, because of what I thought at that time, it meant no hope. No hope for surgery because it had already spread. No hope for treatment because it was stage 4. I thought to myself, they don’t treat stage 4 lung cancer. It was early summer, and the most I could hope for was that my dad would be around here for Christmas. Somehow even that seemed unrealistic. I felt like I had five minutes left with my father and time was ticking. One of my very best friends happens to be Susan Smedley Gerber. Some of you may know her. She is on staff at Free to Breathe, and a lung cancer survivor herself. Her cancer was caught early and she has been cancer free for 16 years. I will never forget the way she made me feel after I told her about my dad.
“Susan, they think it’s stage 4. They can’t do surgery because it’s already As many people spread. We who have faced have an DID YOU KNOW? this before, you appointment You can find all of the same patient resources that helped don’t get to see with the Lisa on our website: freetobreathe.org/patientresources the oncologist that oncologist, same day, and most likely not the next but I feel like he is just going to tell me day either. Sometimes you wait weeks there’s nothing that can be done.” to get into your first appointment. So in the meantime all you do is wait. Wait with the information you’ve been
freetobreathe.org
At that point Susan said a few things. I don’t recall her exact words because my brain only remembers how she was
Lisa Steil with her father
making me feel. I remember something like, “Lisa there are treatments available for stage 4. People go on to live years after being diagnosed. Lisa, there is definitely hope for your dad.” Did she just say, “hope”? Not only did she give me hope. She gave me direction. She told me I needed to contact Free to Breathe and get their information packet. At that time, I didn’t know very much about Free to Breathe. I only knew they were an organization that Susan was involved with, and they were trying to raise funds for lung cancer research. What I didn’t know about was the level of support they provide to families. The packet I received that day was invaluable. It gave us what we needed to prepare for our first appointment with the oncologist. We had a list of questions to ask, information on treatments, statistics, clinical trials, and hope. We had hope. That was May of 2010, almost four CONTINUED on p. 6
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NEW FUNDING AIMED AT STOPPING THE SPREAD OF LUNG CANCER AND INCREASING SURVIVAL RESEARCH PROGRAMS
There’s good news among the lung cancer community — lung cancer five-year survival rate has risen from 15 to 16.8 percent! This is incredible, as prior to this year, the survival rate had been virtually stagnant for over a decade. This success is closely shared with everyone dedicated to the cause. Thanks to your support, Free to Breathe has funded over $4 million in research since 2005 that has helped bring about significant progress and, undoubtedly, worked to move that needle even closer toward our goal of doubling lung cancer survival by 2022.
Gao is working to prevent lung tumors from getting the fuel they need to grow, which may, in turn, lead to promising lung cancer treatments. There is no doubt that our grant recipients from the Young Investigator program will continue to make scientific breakthroughs, and Free to Breathe is looking ahead and asking specific questions to our Scientific Executive Committee about how to build off this momentum. In the coming years, we will aim at one area in particular that is proven to improve survival among lung cancer patients — stopping metastasis.
Our Young Investigator Research Grant Dr. Lauren Avrett Byers, 2013 Young Investigator Research Grant Recipient program has been invaluable in propelling research. Last Metastasis refers to the spread of year’s recipient, Dr. Lauren Avrett Byers cancer cells that result in tumors from MD Anderson Cancer Center, forming in other parts of the body. launched a clinical trial in 2014 to test Research has shown that when lung a new small cell lung cancer treatment cancer is treated before tumors have supported by Free to Breathe funding. metastasized, the five-year survival rate is considerably higher. Preventing In 2014, Free to Breathe is funding the spread of the disease is crucial, six new investigators focused on as metastasis is the primary cause of projects in up-and-coming areas with death for almost all cancer patients. the greatest potential to extend lives for patients diagnosed with lung Since we know stopping metastasis cancer. Dr. Dingcheng Gao, from will be effective at saving lives, Free Weill Medical College of Cornell to Breathe is looking to accelerate University, is one such researcher. Dr.
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the process. We have launched an exciting, new research grant program that will provide larger amounts of funding to researchers focused on stopping the spread of lung cancer. This new research program will support scientists with proposals judged to be the best chance for preventing or stopping the spread of lung cancer in patients. The winners of this Free to Breathe Research Grant will receive funding totaling $600,000, to be paid over the course of three years as they conduct their scientific study with the end result being a clinical trial. By fully supporting research proven to move survival rates, we are on track toward achieving our vision of doubling lung cancer survival by 2022.
VISIT freetobreathe.org/ researchprogram to learn more!
APPLY TODAY! The Free to Breathe Research Grant program is currently accepting applications for 2015. We will fund up to three of these awards to support high-impact, innovative lung cancer research solely focused on preventing or stopping metastasis that will result in clinical translation by the end of the threeyear award period. Our ultimate goal is to fund research that will result in treatments for lung cancer patients and increase survival. The application deadline is Nov. 7, 2014.
VISIT freetobreathe.org/researchgrant for application instructions.
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to Mt. Everest basecamp with his bottle of erlotinib in tow -- the treatment he believes made it all possible. Marty is currently enrolled in a new trial focused on immunotherapy. He says, “During the past six years I have seen amazing progress with targeted therapy, not only in lung cancer but for all cancers.” His story is but one example of why building momentum behind research and clinical trials remains one of the most definitive ways to double lung cancer survival.
CONQUERING EVEREST AND EVERYDAY MOMENTS WITH NEW TREATMENT OPTIONS MARTY KALLISH’S JOURNEY
Clinical trials are critical to developing and improving treatments for lung cancer patients. Successful trials have brought about numerous scientific breakthroughs that have made it possible for physicians to offer advanced targeted therapies to patients, and give those facing a lung cancer diagnosis the gift of more time. No one understands the importance of clinical trials more than Marty Kallish. Marty, an active runner and former Marine, was diagnosed with stage 4 lung cancer in 2008 when a chest X-ray revealed multiple tumors. As he faced the uncertainty of the disease, Marty’s former military training helped him mentally prepare for what lay ahead. He began taking control of what he could in the way of his treatment -- reading up on his diagnosis, preparing questions for his
freetobreathe.org
Marty Kallish at Mount Everest base camp
physicians, and asking for second opinions. Marty and his doctors explored all options, including new targeted therapies just becoming available to patients. At the time of Marty’s initial diagnosis, a drug called erlotinib (Tarceva®) had just completed a successful clinical trial, making it one of the first targeted therapies for advanced non-small cell lung cancer patients with a specific genetic mutation. The end result of this trial translated to hope for thousands of people living with lung cancer.
Unfortunately, many barriers stand in the path of clinical trials and their success in improving quality of life and extending time for lung cancer patients. Some of the greatest barriers are inadequate funding, low participation rates and lack of awareness by both patients and physicians. Clinical trials are expensive to perform; it often requires millions of dollars to get off the ground. Even when funding for these projects is available, researchers struggle to raise awareness about the trial and to find patients who are willing and able to participate – it is estimated as many as 80 percent of trials experience delays due to lack of enrollment -- delays that slow down the progress of research.
Thanks to the recommendation of his physicians, Marty was able to benefit from these advances in research. For him, the new treatment Overcoming these meant years of obstacles will be a improved health and fundamental task as breathing, years of we look to progress clear scans, and our vision. Free to years to fill with Breathe is hard at work moments like seeing to double the number his daughter walk Kallish during a trip to the Republc of Chile of lung cancer patients down the aisle and enrolled in clinical trials. holding his grandbabies. Marty was even able to fulfill one of his lifelong CONTINUED on p. 7 dreams, making the 18,000-foot trek L U N G C A NC E R V O I CE | FALL ‘14
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OVER $54,000 RAISED BY DITCHING RAZORS FOR LUNG CANCER
COMMUNITY FUNDRAISING
Since losing his mother Laurie to lung cancer in 2010, Andy Spence has made a huge impact on the lung cancer community in a rather unconventional way – by asking men to put down their razors. When Laurie passed away after her long battle with the disease, Andy knew he’d miss the woman who had been a guiding force within their family. Andy describes his mother as a devoted wife and mom to three children who never missed a single one of their sporting events. While remaining an active member of her community, as well as an avid reader, Laurie always found time to create special memories with the ones she loved most, especially around the holidays. “Nothing captured her time, energy and imagination like the holiday season. Christmas was her shining moment. The day Thanksgiving decorations went down the Christmas decorations went up – and then continued to go up for another week. She didn’t stop until our house rivaled a department store,” REGISTER TODAY Andy recalls.
Andy Spence with his family
decided to start a fundraiser titled Beards for Hope. Beards for Hope is a four-week beard growing contest. The concept is simple. You just have to stop shaving and fundraise. In the first year, Andy had no idea what to expect. “We would have been happy if we had raised $500.” He never could have foreseen Beards for Hope drawing in over 30 growers and a large group of supporters, which ultimately raised over $7,000. This number grew to over $20,000 throughout the following year. Since its inception, the campaign has resulted in over $54,000 raised to support lung cancer research!
There’s no doubt that community fundraisers like these help make it possible for Free to Breathe to begin funding to join a team significantly larger in this year’s Beards for Hope grants focused Andy realized campaign. Visit freetobreathe.org/ on stopping the how challenging metastasis of that first Christmas beardsforhope lung cancer. The without Laurie outcomes from the Beards for Hope would be for himself and the rest of his campaign are astounding, and Andy is family. As December approached, he excited to see this event growing from determined it would be better to embrace a local Minneapolis fundraiser to a his loss rather than stagger through the nationwide effort beginning in 2014. holiday season. Channeling his sadness into action, Andy
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Get involved with this year’s Beards for
Hope event! Start your team or donate to take this fundraiser to the next level. All proceeds associated with the 2014 event will benefit lung cancer research. VISIT freetobreathe.org/beardsforhope to learn more and register your team.
ARMED WITH INFORMATION, cont. years ago, and since then I’ve learned that lung cancer claims the most lives of all cancers, yet it receives the least amount of funding. And what I thought was going to be five minutes with my dad turned out to be 3 and 1/2 years. More than I had hoped for. He passed away last September and since he is no longer free to breathe, I will be Free to Breathe for the both of us.
Lisa remains grateful for the resources and invaluable hope she found in Free to Breathe. She is planning to attend the Action Summit in September and busy preparing for the 2015 Madison Free to Breathe Yogathon on January 31. VISIT freetobreathe.org/patientresources to order our free patient resources.
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FREE TO BREATHE STAFF PARTICIPATES IN SPRING NATIONAL WALK WEEK Two weeks out of every year, teams for the National Walk form across the country by people who want to join the lung cancer movement. Some people participate because they live too far away from a formal Free to Breathe event location, others as a way to continue fundraising while waiting for their local event day to arrive. Regardless of the reason, one thing is for sure; the National Walk Weeks are one of the many ways to be involved with Free to Breathe in an event that is entirely unique. This year, Free to Breathe staff member, Erin Willemsen, planned her first Spring National Walk around the city of Madison and formed “Team Free to Breathers” consisting of national office staff and volunteers. Holding weekly fundraisers like a “Book and Bake Sale” and “Celebrity Photo Swap,” Erin reached her fundraising goal, alongside other teams participating from June 1-8. “It was important to show that we are in this together, working side-by-side with our advocates toward the same goal of doubling lung cancer survival,” says Erin.
CONQUERING EVEREST, cont.
Team “Free to Breathers” following the 2014 Spring National Walk
From funding a Clinical Trial Innovation Prize to supporting ideas that will determine the best way to build participation, our evolved programmatic focus will help jumpstart accrual and give more treatment options to patients like Marty. Marty just celebrated his sixth year as a lung cancer survivor. While lung cancer continues to be something he’s living with, Marty’s outlook remains positive and he refuses to give up. His hope is that more lung cancer patients and families will have the opportunity to learn about and participate in clinical trials that prompt researchers to uncover the next scientific breakthrough
in lung cancer treatment. “There are people working every day to develop new drugs and new therapies and one of them, no matter how bad you feel, could be the one that saves your life.” build momentum behind clinical trials, like the ones that helped Marty Kallish. Learn more at freetobreathe.org. HELP US
DID YOU KNOW? Free to Breathe is partnered with EmergingMed to help patients take action and learn about clinical trials that they may be eligible for clinical trial navigators are on hand to help you identify trials that may be a match for your specific diagnosis and treatment history. VISIT freetobreathe.org/clinicaltrials for more information.
Fall National Walk Week is fast approaching! If you are looking for a way to connect with the Free to Breathe community, this is an unique opportunity to plan your own walk and fundraise. REGISTER at freetobreathe.org/fallnw freetobreathe.org
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BREAST 80%
COLORECTAL 60%
US 5-YEAR SURVIVAL RATE
40%
20%
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$6,000
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