A N N U A L R E P O RT 2 0 1 6
ANNUAL R E P O RT 2016
TA B L E O F C O N T E N T S 1 MESSAGE OF HOPE from Bonnie J. Addario, Founder & Survivor 2 PATIENTS / CAREGIVERS / ADVOCATES 4 CORPORATE SUPPORTERS 5 PROGRAM EXCELLENCE 6 RESEARCHERS / VOLUNTEERS / STAFF 8 IMPACT BY THE NUMBERS 9 FUNDING ALCF PROGRAMS 10 MESSAGE from David LeDuc, Executive Director 11 DONORS
M E S S AG E O F H O P E
In 2006 ALCF launched its “lung cancer moonshot” with its founding as a patient-first, patient-driven organization. Two years later we added a “booster rocket” with the establishment of the Addario Lung Cancer Medical Institute (ALCMI) to focus on research. A decade later, in January 2016, the Obama administration launched The Cancer Moonshot Initiative dedicated to doubling the rate of progress toward a cure for cancer. In August I was invited as a patient advocate to attend the Cancer Moonshot Summit in Washington D.C. where I had the opportunity to bring our message to Vice President Biden and Moonshot Task Force CEO Greg Simon. This brought lung cancer, which often comes with a stigma, to the table as an equal to all cancers. I promise you; our goal of making lung cancer a chronically managed disease is not “pie in the sky”!
When we reflect on 2016, we see positive changes and actions that can be measured with data. Equally important, we feel hope, which although intangible is every bit as critical to living with lung cancer.
Our Annual Report focuses on some of the pilots and passengers on board ALCF’s moonshot. They are doctors, researchers, advocates, patients, caregivers and families, all on the same trajectory of hope. Our Annual Report also shares the story of some of the people fueling our moonshot. They are individual and corporate donors, volunteers and staff, all sharing their resources to advance us toward our goal. Everyone is part of our team and intricate to the success of our shared mission.
Although you may not recognize faces, I know that the personal stories that follow will resonate with you. Each story is personal, but because lung cancer knows no borders, each story is also universal. Thanks to each of you, ALCF milestones this year are many, including:
• launching a global ROS1 study to look at this rare mutation across all cancer types; • establishing an international Patient Registry to share data;
• expanding our Community Hospital Centers of Excellence to reach more underserved, at-risk patients; • identifying unique drivers of lung cancer in adolescents/young adults through our global Genomics of Young Lung Cancer Study;
• collaborating with the American Lung Association to create the Momentum Award, a new research award to study lung cancer in women; • funding outside-the-box research through our Young Innovators Team Award.
From the start your generosity has been a constant and in 2016 you have helped us to advance our moonshot mission.Yes, there is still much to be done. Through collaboration, commitment, compassion and hope, the day is coming when we will join together and yell at the top of our lungs – “mission accomplished”!
With love,
Bonnie J. Addario, Founder & Survivor P.S. Because lung cancer is a global disease, ALCF's work and efforts are GLOBAL!
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PAT I E N T S / C A R E G I V E R S / A DVO C AT E S
Meet Jim Brown Firefighter’s Fight Puts Him on the Front Lines of ROS1 Study
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Jim
Brown, a 49-year-old father of three and captain with the Olympia Fire Department in Washington, shows his grit fighting stage 4 lung cancer through the words “Hold Fast” tattooed on his knuckles. The tattoos, originally inspired by his dad who was in the Coast Guard and the Navy, are a warning sign to sailors to “hang on and persevere because there’s a storm coming.” Since his diagnosis in 2015, Jim has looked to these words as his own battle cry. And his motto has taken hold not only in the town of Olympia but with everyone Jim meets. “It doesn't make sense that I have lung cancer. I was a healthy athlete, and I developed breathing problems. All of a sudden I have stage 4 lung cancer and somebody telling me if you don’t get into treatment right away you might have 3–6 months to live,” Brown said. “It’s a pretty big punch in the face. “One of the things lung cancer really suffers from is a stigma, which inhibits people from funding lung cancer research,” Brown said. “One of the goals of ALCF is to change the face of lung cancer and help remove that stigma.” Brown suspects that his cancer came from his career fighting fires and exposure to carcinogens. Brown is now working with other firefighters to educate them about best practices for disease prevention. Brown receives treatment through the Cancer Care Alliance in Seattle, where he has undergone 29 rounds of chemotherapy. Molecular testing revealed that he has
a ROS1-fusion, a relatively rare subset of cancer typically accounting for only 1–2% of lung cancers. In 2016, at the request of Jim and other patients with the ROS1-fusion, ALCF and ALCMI launched a global, first-ever pan-cancer study to investigate the causes of ROS1 cancers. Jim is one of 120+ patients with various types of cancer (lung, colorectal, ovarian, gastric, etc) from 11 countries enrolled in the study. By being part of the ROS1 Study, Jim hopes to advance research to develop new treatments and better outcomes for all patients. “My intent is to keep getting up every day, keep beating cancer, and keep living life as fully as I can.” Hold Fast, Jim! ¢
Meet Sisters Bekah & Betsy “Welcome to the inspiration station.” Those words launched “Beat Young Lung Cancer,” a blog authored by Bekah Cunningham, “a 30-year-old chick who happens to have lung cancer,” and her sister, Betsy Yohn, who has been Bekah’s rock since her diagnosis in early 2016. When Bekah found a lump in her breast she thought, “I'm not an unhealthy sick person. I’m sure it’s just a cyst." In fact, in just a few weeks, an initial misdiagnosis of breast cancer became a stage 4 lung cancer diagnosis. A family friend introduced her to the ALCF. Together with the patient services department, Bekah devised a plan
to fight the disease. Initially she received chemotherapy, but when genetic testing showed that she had the ALK mutation, Bekah became a candidate for a targeted drug. She now takes one pill a day. To date she has been on two targeted therapies and is doing well. “ALCF’s Patient Handbook was an incredible asset for me. The internet is full of old and fake news. This handbook is 100% current, relevant and accurate.” She also enrolled in the Genomics of Young Lung Cancer study run by ALCMI that looks at the unique disease drivers in people under age 40.
Meet Adam Klein Winner of CBS’s “Survivor” Series Gives New Meaning to Word with Honoring of Dynamic Mother 2016 was both a year of great victory and tremendous tragedy for Adam Klein and his family. As the season 33 winner of the popular reality show “Survivor,” his biggest dream came true. However, an extremely painful reality also came to pass in 2016 when Adam lost his beloved mother Susie to lung cancer. “I had been dreaming of winning ‘Survivor’ since I was age 9. In fact, in 2014 my mom and I tried out together but didn’t make the cut.” says Adam. “At 58 years old, she would have been the third oldest woman in ‘Survivor’ history. At that time she was physically cleared for the game and would have run circles around me on the show. Then, in 2016 I got chosen to go on by myself” In 2015 Susie Klein, a woman who danced, smiled and laughed through life, was diagnosed with stage 4 lung cancer. The family was stunned; she was the epitome of health. She never smoked, exercised daily and even ate organically. “Even after her diagnosis, my mom continued to live life to the fullest. She inspired me and encouraged me to apply to ‘Survivor’ again,” says Adam. “It was hard to think about something like ‘Survivor’ when our lives had just taken such a serious turn, but if my mom was going to keep living at 100%, I was going to follow her lead, and so I applied.” Susie passed with her family by her side in May 2016, just an hour after Adam returned home from taping the show. He told her he had won. . .moments later she took her last breath.
“There is no doubt in my mind that by doing as well in the game as I did, I may have extended her life. At the very least, I made her final weeks as joyous as they could possibly be,” says Adam. “I believe that she hung on for me, and I’m at peace that I had accomplished our dream.” Needing to channel his grief into something positive, Adam started a ‘youcaring’ campaign to raise money for lung cancer research. “I am determined to bring some meaning to my mother’s passing by being an advocate to raise awareness and funds to benefit lung cancer research,” says Adam. “I want to leverage whatever fleeting visibility I have being on ‘Survivor’ to do something really meaningful.” Adam and his family remain dedicated to helping the cause in his mother’s memory. Adam says, “The opportunity to help others, so that other families like ours don't have to be torn apart by a senseless disease, is helping us to bring some good out of bad.” ¢
From the start her sister Betsy has been at her side, putting her life on hold and temporarily relocating from Texas to Alabama to care for her sister. She researched treatment options, went to doctor appointments, dealt with insurance issues. . .the list goes on. Betsy received ALCF’s 2016 “Wind Beneath My Wings Caregiver Award” honoring compassionate people who go above the call of duty to care for a loved one facing lung cancer. When it rains, pour on the glitter and dance. That’s Bekah’s motto as she fights lung cancer with hope and her sister by her side every step of the way! See: bandbbeatcancer.com ¢
“She is so much more than a sister. She’s a lifeline.” Left to right: Sisters Bekah & Betsy
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C O R P O R AT E S U P P O RT E R S
Meet John Matthews & SAP Executive’s Loss of Beloved Mother Inspires Involvement with ALCF
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International company SAP has been a longtime supporter of ALCF. Their commitment started when SAP Vice President John Matthews lost his mother Kathleen to lung cancer. Every year SAP supports the “Your Next Step is The Cure” by sending employee volunteers and participants. “Family was everything to Mom. She was married to a loving husband and had six kids and 19 grandchildren— we are ‘Kathleen’s Krew’,” says son John. “In 2011 when we heard the words ‘lung cancer,’ we were scared, but Mom was determined to beat it—she left us with a lifelong lesson in dignity, hope, and love.” “ We are so grateful to partner with communityminded corporations like SAP whose support helps ALCF bring attention to the world’s number one cancer killer each year,” says Bonnie J. Addario. “I had the chance to meet Kathleen before she died and I know that she would be so very proud of her family.” In 2016 John joined the ALCF board of directors and began to plan a 2017 coast-to-coast bike ride to “chase down a cure for lung cancer, one mile at a time.” “SAP employees are all in—helping create the communications plan, developing an app to track the ride
Meet Jason Fitzsimons & Equity Builders Group, Inc. Business Leader Hits the Golf Course & the Gala to Fight Cancer When it comes to supporting ALCF, Jason Fitzsimons and Equity Builders Group, Inc. are “simply the best”! These three words define his commitment to fighting lung cancer through his company’s sponsorship of ALCF annual events: the Drive It Off the Earth Golf Tournament and the Gala in 2016. However, when Jason sums up Bonnie and ALCF, he uses one word: “selflessness.” “Whether you’re a patient, part of the team, or an outsider looking in like me, there is nothing less than open arms and an eagerness to help and to put your mind at rest, knowing that the best of the best in the industry are on the move to find a cure for you and your family,” says Jason. Jason explained how Bonnie extended her personal resources to his family for a cancer that wasn’t even in what he calls “ALCF’S wheelhouse.” Although his wife Jennifer died of breast cancer, this didn’t stop Bonnie and
"Kathleen's Krew" with back row showing John (far left) & Bonnie (center) between Bob & Kathleen, John’s parents and more.” ALCF and the Lung Cancer Alliance are also partnering with John on his ride, with all funds raised going to benefit these non-profit organizations. See: ridehardbreatheeasy.com ¢
Left to right: Danielle Hicks (Associate Executive Director, Patient Services & Programs), Jason, Andrea Parks (Associate Executive Director, Partnerships & Development)
ALCF from helping his family. “The resources they offered, including connecting with Bonnie’s personal physician, were reasons why my wife got to spend as much time as she did with her two young daughters.” Yes, Jason loves playing golf and going to the gala, but he considers his personal and company support for these events the best way to fight lung cancer and all cancers, adding that “a world without Bonnie would be a world without hope.” ¢
P RO G R A M E X C E L L E N C E
Meet Penny Dean Community Hospital “Center of Excellence” Patient Navigator Reaching Out to Patient Led to LifeSaving Early Diagnosis “You saved my life!” These are the words Penny Dean, LPN, Patient Navigator, at Saint Thomas in Nashville, TN heard from a lung cancer patient after finding an incidental lung mass. Penny, along with other members of her multi-disciplinary team at Saint Thomas, was there to ensure the patient had the appropriate care. Saint Thomas is part of ALCF’s “Center of Excellence” (COE) program at community hospitals. In 2016, 2,500+ patients received treatment at 13 COE sites nationwide. Brenda Turner, of Tompkinsville, KY, underwent a head and neck CT scan when clinicians found she had an unrelated mass in her right lung. A radiology report was flagged to Penny as being suspicious. After Penny contacted the patient’s provider, she reached out to the patient. It was Penny’s efforts to make early contact by letter that alerted Brenda to the situation and immediately had her scheduled into the lung clinic at Saint Thomas. According to
Penny, many patients will be responsive to letters by mail. A week later Penny received an emotional call from Brenda who shared the news that the biopsy revealed the mass was cancer. “I never felt sick and I’m so grateful to my care team for finding this so early,” said Brenda, who has lost a sister to lung cancer. Penny coordinated with the entire Saint Thomas team to ensure the patient was rapidly diagnosed and a treatment plan set up. Surgeons successfully removed the cancerous lobe of her lung. “I’m feeling better after my surgery, getting stronger each day and looking forward to a full recovery.” Multi-disciplinary care and coordination are the cornerstone of the COE program. “What you do makes a difference,” declared Brenda. “You were there to followup on the initial findings and to make sure I was informed and had access to immediate treatment.” ¢
Patient Brenda Turner with husband Richard
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LCF and the International Association for the Study of Lung Cancer created their first JOINT FELLOWSHIP AWARD to advance early detection of lung cancer. Recipient Robin Mjelle, PhD, Norwegian University of Science & Technology, has done extensive research with the aim of developing a blood-based biomarker panel for early detection. The $300,000 award allows him to use pre-diagnostic serum samples to measure RNA, proteins and metabolites in lung cancer patients and healthy controls. This project is unique as it enables detection of biomarkers that could predict cancer at a curable stage.
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R E S E A R C H E R S / VO L U N T E E R S / S TA F F
Meet Drs. Trever Bivona, Jonathan Riess & Ryan Corcoran, Recipients of the Young Innovators Team Award Discovering why some lung cancers become says Guneet Walia, Ph.D., ALCF senior resistant to drug therapy is what drives the director of research and medical affairs. multi-institutional, collaborative research of “Part of our foundation’s responsibility Drs. Bivona, Riess and Corcoran, recipients and commitment as investors and facilitaof the Young Innovators Team Award (YITA) tors of innovative work is to have on-going funded by ALCF in collaboration with the communication with our grantees, to help Van Auken Private Foundation (VAPF). them find ways to further their research 2016 brought tremendous progress in and build bridges to ensure that.” what they have discovered since being the In 2016 ALCF connected the YITA first YITA recipients in 2014, and in ALCF grantees with ALCMI whose CASTLE furthering the grantees’ work by facilitating study has been collecting tumor and blood Dr. Trever Bivona collaborative research with their partner samples and clinical data to build a lung organization, Addario Lung Cancer Medical cancer bio- and data-repository to aid Foundation (ALCMI), as well as connecting research on advanced diagnostics and them with Genentech. therapeutics. With patient specimens “A protein called YAP plays a major role from CASTLE, the YITA researchers will in resistance to targeted cancer therapies,” study YAP gene levels and their correlation says lead investigator Dr. Trever Bivona. “By to response to targeted therapies. identifying the mechanism by which elevated The goal is to utilize discoveries, funded YAP levels promote cancer cell survival, by ALCF and ALCMI, to design a clinical our work points the way to combination trial around targeting the YAP/TAZ pathway therapies that may overcome resistance in lung cancer. “By connecting our YITA to individual targeted drugs.” recipients with Genentech, a long-time Dr. Jonathon Riess Targeted drug efficacy diminishes over supporter of our patient programs,” says time because cancer cells figure out a way Dr. Walia, “we have opened the door to to outwit the drug’s biological pathway. conversations about their supporting a Although switching to a different targeted clinical trial based on the YITA research.” drug is an option, a much better approach, The novel YITA study holds the says Dr. Bivona, would be “to learn how to potential to impact lung cancer patients as wipe out that alternative survival pathway well as patients with melanoma, pancreatic, at the beginning of therapy — to pull the thyroid and colon cancer in which the YAP rug out from under those cells right away signaling pathway plays a crucial role in through using customized targeted drug tumor growth and therapy resistance. combinations at the start of therapy.” “Drs. Bivona, Riess and Corcoran The grantees have discovered that the embody the multidisciplinary, translational Dr. Ryan Corcoran YAP pathway controls therapy response by and cross-institutional spirit of YITA,” says regulating certain cell death proteins. This discovery Bonnie J. Addario. “Through their innovative research, advances their work toward targeting the YAP signaling patients sharing their stories and invaluable data, and pathway to fight tumor growth and therapy resistance. collaborative non-profits and industry leaders providing “ALCF’s approach to supporting the work of young support, together we will build the bridge to making lung researchers goes far beyond providing the initial funding,” cancer a chronically managed disease.” ¢
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rs. David MacPherson, Fred Hutchinson Cancer Research Center, Seattle, WA, and John Poirier, Memorial Sloan Kettering Cancer Center/Cornell University, NY, received the 2016 YITA AWARD. Their proposal to investigate a novel, targeted approach to treating small cell lung cancer emerged as the winner in a rigorous process by ALCF’s Scientific Review Committee of global lung cancer key opinion leaders.
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Meet K.C. Oakley Loss of College Roommate Drives Friend to Champion “Jill’s Legacy” K.C. Oakley has seen first-hand what it means to have the world turned upside down by lung cancer. Her best friend and college roommate, Jill Costello, an accomplished athlete on the UC Berkeley crew team, died at age 22, just one year after being diagnosed. Jill’s greatest wish was to “BEAT LUNG CANCER BIG TIME.” K.C. and a group of friends took on Jill’s mission to fight the disease
by founding Jill’s Legacy in 2011, an Advisory Board to ALCF, committed to raising awareness and funding research for adolescent/young adult (AYA) lung cancer. “Jill certainly didn’t fit the ‘profile’ of someone with lung cancer. She was young, healthy and athletic,” says K.C. “Until lung cancer affects you personally, you don’t know that the disease is the #1 cancer killer annually and if you are a young person, you certainly don’t know that you are at risk.” “K.C. is a person who has transitioned along a continuum of increased involvement with ALCF,” says Bonnie J. Addario. “Her experience as a friend and caregiver first galvanized her to be a volunteer and advocate and in 2016 we welcomed her to our staff as national coordinator for Jill’s Legacy.” The grit, hard work and hope-filled, can-do attitude that K.C. exhibits as a member of the U.S. Freestyle Ski Team serve her well in facing the challenges of educating and raising awareness among young people and being an integral part of the ALCF team. “Through social media, speaking at youth leadership events nationally and creating a bank of real life stories told by young people like Jill, we can start to make progress toward bringing change,” says K.C. “I am committed to building a generation of future leaders passionate about fighting lung cancer and all cancers affecting AYAs.” See: lungcancerfoundation.org/jills-legacy ¢
Meet Anna Plaza Daughter Turns Loss into Activism with Kite Flying her Messenger “There is so much I remember about my mom since she died: how tears would form in her eyes when she laughed too hard, how she wanted to celebrate Christmas and New Year’s (hats, streamers and all) despite being in the hospital, how she told me a few days before she passed that I was her perfect daughter,” says Anna. When Lily, age 61, passed away in 2008 from stage 4 lung cancer, Anna vowed to continue her fight. Lily didn’t “fit the profile” and time was wasted until her diagnosis came almost 8 months after her first symptoms. “For over two years my mom battled Bronchioalveolar Lung Cancer (BAC). When I tell people how she died, their next question is almost always, ‘did she smoke?’ It’s so disheartening that people only associate lung cancer with smokers,” says Anna. “While my mother never smoked, no one deserves to suffer with lung cancer. This is why she wanted to see this out — to make others aware that her disease is not uncommon and more needs to be done.” In 2009, Anna turned her loss into activism through Lily’s Light, an annual Kite Flying Event in South Florida to raise money for
research, find a cure and remove the lung cancer stigma. In 2015 Anna and Bonnie connected through Memorial Cancer Institute, an ALCF Center of Excellence, in Hollywood, FL. Anna is now ALCF’s first eastern regional events manager. “My mother continues to inspire me and I know that her hope is kept aloft by the work and dedication of ALCF, patients and their families, and daughters like me committed to keep fighting,” says Anna. There is nothing more hopeful and uplifting than flying a kite! ¢
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830,237 Total Impressions: Patient Education Video Library reach to 144 countries (2008–16)
84,744 Total Impressions: Patient Education Video Library reach (2016)
216,994 Social Media reach to 35+ countries
2,600 110,292 Website Visits (85,840 unique visitors) 2016 PAT I E N T / C O M M U N I T Y OUTREACH & ADVOCACY
IMPACT BY THE NUMBER S *Data based on figures tabulated by Perry Communications Group, Inc. on a quarterly basis.
16,920 Viewers of Living Room Series (Livestreamed & Post-Program) in 60+ countries
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325,000,000* Total Media Impressions
Patients in 13 Community Hospital Centers of Excellence
30+ million Viewers of Outdoor Billboard Campaign, Times Square, NY (November, Lung Cancer Awareness Month)
15,000 Participants & Donors at National Events
2,150 Distribution of Patient Education Handbook (English, Spanish, Chinese versions)
F U N D I N G A L C F P RO G R A M S
Fund Allocation 2016:
88% of every dollar donated supports programs, services, outreach & research.
18% Patient Programs & Services
12%
46%
Administration
Research
24% Awareness & Outreach
Revenue Raised 2016: $4,848,864 (pre-audited)
Individual/ Foundation
15% 56% 29% Events
Corporate/ Industry
18% PATIENT PROGRAMS & SERVICES Bring Hope Home Living Room Education/Support Group & Speaker Series; Patient Education Handbook, Navigating Lung Cancer: 360Âş of Hope; Education Video/Archive Library; Community Hospital Centers of Excellence; Patient Portal/Personal Navigation; Patient Registry
24% AWARENESS & OUTREACH Website; Monthly E-Newsletter; Patient Education Resource Centers at National Race Series; National & Local Events; Print & Social Media Campaigns
46% RESEARCH (ALCMI* & RESEARCH INITIATIVES) Genomics of Young Lung**; CASTLE; INHERIT EGFR T790M; Scientific Advisory Board Grants; Coordinating Center for NCI Small Cell Lung Cancer Consortium; Epidemiology of Young Lung Cancer; Liquid Biopsies in Lung Cancer Study; ROS1 Mutation, Pan-Cancer, PatientDirected Cohort Study; Phase II Immuno-oncology SCLC Trial 12% ADMINISTRATION
* The Addario Lung Cancer Medical Institute (ALCMI), ALCF’s non-profit partner organization founded in 2008, is a patient-centric international research consortium of 20+ institutions in the U.S. and Europe. ALCMI focuses on unique scientific and clinical research initiatives to accelerate the discovery and delivery of advancements to benefit patients. Steven W. Young, President & COO, Tony Addario, Chair & CEO. See: ALCMI.net ** In 2016 our global Genomics of Young Lung Study that looks at unique drivers in lung cancer in patients under age 40 received international attention from the America Association of Cancer Research, America Society of Clinical Oncology, and World Conference on Lung Cancer. ALCMI presented early findings that close to 80% of young patients have a driver mutation treatable with available targeted therapies and also identified two novel EGFR gene fusions. These fusions would not have been discovered via standard genomic testing. Patients would likely only have been offered cytotoxic and less effective chemotherapy instead of EGFR-targeted drugs to which their tumors responded very well.
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he Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, -powered, -driven) devoted exclusively to eradicating lung cancer through research, education and advocacy. Our goal is to work globally with a diverse group of physicians, organizations, industry partners, individuals, patients, survivors and their families to identify solutions and make timely and meaningful change and turn lung cancer into a chronically managed disease and ultimately a curable disease.The ALCF was established on March 1, 2006 as a 501c(3) non-profit organization. Tax ID: 20-4417327
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Message from David LeDuc, Executive Director
The greatest experts and assets we have in making lung cancer a survivable disease are the patients around the world who live with it every day. However, for too long our greatest resources haven’t had a way to make their voices heard nor an infrastructure to share their data to benefit the global lung cancer community. This is no longer the case.
In 2016 ALCF in partnership with the American Lung Association created an international Lung Cancer Patient Registry. We ask patients to join and contribute their personal disease data so that it can be openly shared with other patients, researchers, clinicians and industry. We are creating a gold mine of data to fight this disease to advance us toward our goal of making lung cancer a chronically managed disease and ultimately a curable disease.
Patients participating in creating the Registry’s knowledge base help researchers better understand the disease. Big data is a big deal because by studying a great deal of information researchers can see patterns and develop improved diagnostics and treatments. In turn, because the Registry is an open platform, patients can do their own research to find information about others’ treatment plans, what does and does not work with similar cancer types, and have the option to be notified about clinical trials that might be of benefit. By engaging in dialogue with others, we broaden the impact of our joint efforts. Knowledge is power. Patients like the ones featured in our annual report are the drivers of this power and the Registry is the vehicle that will help us achieve our long-term mission. “The Registry lets me become directly involved in the fight against lung cancer. Hopefully my experience and data will help others in the future. We must use every tool available to foster more effective treatment and to find a cure,” says Charles Florsheim, 18-year lung cancer survivor. Many thanks to the patients who have already contributed their data. Since its launch in late 2016, patients have registered representing 13 countries. In the year ahead we look forward to a constantly expanding registry of robust data to aid us in achieving our big goal—a world without lung cancer. See: lungcancerregistry.org Sincerely,
David LeDuc, Executive Director
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n honor of World Cancer Day, ALCF launches an international crowdsourcing challenge yearly encouraging innovators to solve problems plaguing oncology medicine. The CLINICAL TRIALS INNOVATION PRIZE 2016 aims to identify creative ways to increase cancer patient clinical trial enrollment. On average, less than 3–5% of all adult cancer patients participate in trials, with enrollment lower among minorities, people 65+, lower income patients, and those in rural areas. Low enrollment is the main reason why 20% of clinical trials never finish. We want to identify unique solutions by innovators looking at this problem with fresh eyes.
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T H A N K YO U TO O U R D O N O R S !
We greatly appreciate the generosity of all of our supporters. List shows donors of $250 or more from January 1–December 31, 2016. We regret any inaccuracies and/or omissions. Please contact andrea@lungcancerfoundation.org with corrections. Craig Abbey Ronald Abel Andrew Abrams Randy Acres Nick Adamo John Adams Barbara Addario Bonnie J. & Tony Addario Greg Adler Linda A. Aessi Neville Agass Kulvinder & Romina Ahuja Susan Akins Kim Allen Scott Allen Tim Allen Donald & Cathy Allman Elias Amireh Pradeep Amladi Steve Anderson Gabriel Ang Christine Angeles Karlie Arkin Andrew & Megan Armando Janice Atkenson Michael Ault Douglas Aven Tara Axler Brian Ayoob Lawrence Baer Sam & Janet Bain James, Tonia, Cheryl & Jim Baker Sherry Baker Mary Ballinger Harold & Rosalie Balzer Lee Banks Roy Barbu Royce & Jon Bargas Francesca Bargiacchi & David Eberhard Jay Bartroff Andrea Bastian Scott & Christine Bastian Michael Bates Joe Beatty Phyllis Bedford Janis & Dan Beltramo Jared, Debi, Gianna & Gabrielle Beltramo Stefani & Anthony Beltramo Virginia Beman Kevin Berce Haim Beressi Lucy Berman Sandy & David Berman Barbara Bernstein Anne Beroza & Allen Spirytus Bonnie & Fred Bertetta Jr. Sujata & Prakash Bhalerao Gennaro Bifulco Lloyd Birnbaum Trever & Marguerite Bivona Terry Blachek Zane Blackburn Alicia Blackwood Jessica Blaeser
Jordan Bleyer Michael Blount The Board Family Fred Bohlander John & Kitty Bohlman Nick Bokides & Kerry Heckman-Bokides Kim Bong Bryan Booher Jean Louis Bories Bryan Borra John Bostwick Terri Bowen Tina Boyd Eric Bracy Susan Branch Robert Brand Diana Braun Eileen Brennan Anthony Britton Charles & Donna Broder Tracey Brown & Tom Garrett Stephen & Susan Bubb Allison Buffum Tim & Jennifer Burk Dennis Burke Donald Burke Diana Burnstine Daniel Burton Rob Busher Elizabeth, Allison, David, Douglas & Mary Ann Button Matt Butz Rose Butz Pascal & Catherine Cagni Jared & Jennifer Caldwell Trevor Callaghan Mike & Melissa Campbell Lisa Carco Thomas & Joyce Carl Carole Carney Lloyd & Ana Carney Mike Carr Aida Carter Christen Carter Andrew & Kaydee Castricone Tim Chadwick Marcia Chami Shirley Chang Dianne Chapman Cadey Charfen Tina Charoenpong Aditi Chaubal Allen Chen Helen Chen Eli Chernow Bernard Chow Kerilyn Chuang Kirk Chudzinski Hyun Jung Chung Jay Claiborne Diane Clark Tom, Linda & Jenyce Clark Lisa Cockrell Tracy & Randy Coffman Estee Coldwell
Martha Cole William Cole Dave Conmy Colleen Conner-Ziegler Matthew Cornwall Chris Cosmas Michael Costa Mary, James Michael & Jim Costello Joseph & Sandy Cotteta Laurie Cottrell Robert Cottrell Linda Coward Carolyn Couts Robert Cox Edmund J. Coyne Vicki Crafton Zinn Suzanne & J. Taylor Crandall Kenneth Crane Elizabeth Cromey Jolene & Jim Cross David Culhane Barbara Curry-Kaufman Bret Curtis Barbara D’Agnolo Sean Daly Annabelle DanielVarda Joshua Daub Maureen & Gareth Davies Benjamas Davis Annie-May de Bresson Cathy & Sandy Dean Rob & Trina Dean Malcolm Decamp J.R. & Linda Deemer Jane Delfendahl Adrienne & Michael Delfino Michelle Delia Ignacio & Silvia del Rio Tracy Best Demetre Kim Deweese Christiana Dietzen Costanzo DiPerna Phyllis Dompe James Dredge Nigel Drepaul Jack Dresner Carol Dressler Vivienne Drimmer John Dryden John, Peggy, Christopher, Zoe & Margaret Dryfuss Donna Dubinsky Margaret Duckhorn Melissa Dugan Judith Dunten Carol & Tony Egan Douglas V. Egly Leon Eisenberger Lana El Bacha Farid El-Khalil Naji El-Khalil Rakan El-Khalil Sarri El-Khalil Bruce & Janice Ellig Jerry & Pat Elliot Emily Elswick
Philip & Barbara Emmer Ella Eng Linda & Gale England Victoria Entwistle Alice Erber Dianne Ericsson Scott Esterbrook Nathan Eustis Nicole C. Evans Betsy Everitt Danial Faizullabhoy Judi Fan & Bob Reay Jim S. Farley Maryann S. Farnsworth Amy, Sara, Emily & Roger Faxon Michelle Fee Andrew Feury Joan Fina Sonny Findley & Bill Cone Ken & Leah Fine Deborah & Randy Flanagan-Tobias Arlene & Michael Flatto Russell Flatto Sam Fleischacker & Amy Reichert Zinovy Fichtenholz Peter & Donna Fiore Ellen Fister Patricia Fithian Jason Fitzsimons Javier Flores Barbara Flutie Dorothy D. Fong Frances Fong Ron & Joan Fong George Fowler Paul Fradin Jonathan Frankel Carlo Frati Joseph Frederico Janet Freeman-Daily Richard Frenkel John Friesen Jennifer Fritz Tim & Nalini Frush Brad, Erica & Kaylee Fry Josh Fry Lisa Fry Shellie & Dave Fry Greg, Cheryl & Anaselia Galli Aruna Gambhir Marcel & Lisa Gani Andres, Ondi, Cathy & Joe Garcia Victor Garcia Maureen Gardner Atul & Ewa Garg Maria Garofalo Daniela Gasparini Lorena Gayton Andy Geckler Patrick Gee Bruce & Ellen Gellman Larry C. Gerrman Larry Gershon
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Matthew Herrill Danielle Hetland Danielle, Steve, Colton, Emily & Jack Hicks Dwayne Hill Mary Hill Reed & Jane Hilliard Noel Hinde Dan Hite James & Mandie Hiznay Julie Ho William Ho Gary Hodges Jeffrey Hogue Brent Holden Jackie & Brenda Holder Cynthia Holland Robbie & Justin Holtzinger Ben Holzemer Andrew Horowitz Alana Hoskin David House & Devyani Kamdar Richard Howarth Jr. Doug Howe Mark Howitson Lara Hoyem Allen Hsiao Christine Hsieh Nancy Huang Teresa Huber Kelly Hudson Victoria & Stephen Humphrey Kimberly M. Hunter Nancy & Steve Hutchins Inho Hwang Robert Hyam James Ildefonzo Dr. David Jablons & Tamara Hicks Sara Jackson Scott Jackson Tammy & George Jackson Dr.Valerie & Dr. Thierry Jahan Denise Jemmott Julie Joffrion Carly Johnson Casey Johnson Earl Johnson & Nell O’Donnell Edward & Carole Johnson Gregory & Marion Johnson Mike Johnson Jaime Jones Jeff Jones Jennifer Jones Karin Jones Kristine Jones Sanjeev Judge Jaimi Julian & Scott Thompson Jeff & Kristine Julian Robert & Patricia Julian Marianne Kachulis Eilene Kale Corinne Kalinowski Mardiros Kaloustian Manveen Kalyanpur Rakesh Kamboj Ryan Karcich Constantine Karides Shira Kastan Lance Kaufman Grace Kawahira
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Tim Schmidt Christie Schmitz Gary Schneider Diana Schnell Carol Schnitter Nancy Schort Vince Schwartz Carole Lee & Warren Schwomeyer Terri Schwomeyer Stephanie Seegmuller Diane Seets Tovah Segelman Ashley Seidman Jose Sena Monica Sena Daniel Serpico John & Susan Shaffer Lata & Ajay Shah Sohail Shahpar Beverley Shaw Sandra Shaw Judith Sherbinow Liz & Allen Shevach Mike & Jennifer Shum Tony Shure Mary Sidlauskas Robert & Paela Signorella Rica Silverman James Simon Margaret Sims John Skerry Robert Slawek Brenda Smeby Mary Smith Ray Smith Jennifer Sorrentino Amanda, Michael & Nathaniel Southerland Christopher Spafford Jeff, Whitney & Carly Spagnola Mary Spellman Edward Spiegel Prema Sriram Phillip Stahl Wayne Stansfield Vivian D. Stark-Turner Lorna Stearns Paula & Bill Steele Neal Stephens Rachel Stepp David Stewart Sherri Stiegelmeyer Jacquelyn Stilwell Dr. Ronald & Linda Stoney John Straight Tim & Lynne Straight Robin Strandberg Allison Strathmeier Kendall Strickler Siew-Phek Su Katie Sugarman Carla Sullivan Timothy Sullivan Subramanian Sundaresh Eric Sundquist Lori Susi Tom & Lori Sweeney Daniel Syrkin Mojdeh Talebian Jean Talvola Meena Tandon Cathy Schmidt Tate
Philip Thach Rita Tharakan Douglas Thielscher Mike & Kelly Thomsen Julie Timko Larry Timko Edward Timpone Jill Todd Barbara & James Toso Tiffany Townsend Mo & Theresa Townsley Rob & Sabine Trammell Lynne & Dan Trump Hsin-I Tsai Randy Turley Joe & Amber Tuso Bob Udell Jathin Ullal Connie Unger Maria Vail Richard Valicenti Alyssa & John Vasquez Charles Vestner Gregory Victorino Jamieson Vinson Ann Viola Carole Viola Sheila Von Driska Sarah K. Wagner Beverly & Tim Ward Freda & Leonard Warren Renee Warsaw Brent Watson Lawrence Weisgal & Debbie Tully Alex Welch Ike, Mary, Adam & Isaac Welch Stacey Wexler Mary Beth & Bob Wheeler Asa Whillock Deena White Wells Whitney Leonard Whorton Richard & Gina Wiebe Greg Williams Mary & Steve Williams Sierralyn Williams Vic & Arlene Willits Jim Wise Lisha Wise Jim & Karen Withrow Suzanne Woo Andrew Wood Chips & Crete Wood Sherry Woodhouse Susan Woolf Craig Working Linda Wu Lei Xiao Patrick Yaeger Sara Yee Christine Yelda Betty Yeung Stephen Yeung Monona Yin Julie Zeff Edward Zelnik Marshall Ziock Sarah & Dawn Zwack
FOUNDATION
Addario Family Limited Partnership American Lung Association The Benevity Community Impact Fund The Beth Longwell Foundation
Burns Family Foundation Camp Family Foundation Causecast Foundation-Matching Gift Chami Family Foundation Charles & Ann Florsheim Family Foundation The Draper Foundation Escobosa Family Fund Frank & Denise Quattrone Foundation Gordon & Betty Moore Foundation The Gordon T. & Melissa A. Egan Family Foundation Harris Family Foundation The Herbst Foundation, Inc. The John & Sandra Leland Foundation Kempe Family Foundation Leichtag Foundation Living for Liz Mary DeWitt Wilson Family Fund Orr Family Foundation Ows Chest Foundation Paisley Family Fund The Paul S.A. & Lucy EG Kalanithi Family Trust Peter K. Barker Foundation Richard Dunn Family Foundation Schmidt Legacy Foundation Silicon Valley Community Foundation The Sita Foundation The Thomas Hodge Foundation The Todd Thomas Foundation The Townsley Family Foundation Van Auken Family Foundation W.F. & Marie A Batton Foundation W.M. Keck Foundation The William & Flora Hewlett Foundation Yahoo Employee Foundation
CORPORATE/BUSINESS
ApotheCom Scopemedical Inc. Apple, Inc. Apple, Inc. Matching Gift Association of Community Cancer Centers Astellas Pharma AstraZeneca Pharmaceuticals LP AT&T-Matching Gift Bainco International Investors Bayer Baylor Scott & White Health Billyfest 2016 Boday Booster U.S. Boston Private Bank and Trust Company Bridge Bank Bristol-Myers Squibb Brocade Cabrera Marketing RSCH SVCS LLC Celgene Corporation Cisco Systems, Inc. Consano CPP, Inc. Dignity Health Cancer Institute Direct Line Downtown Yoga El Camino Hospital Elements Brands Eli Lilly and Company Ewing-Foley, Inc. Exosome Diagnostics, Inc. Father Judge High School Fidelity Charitable Gift Florida Farm Bureau Casualty Insurance Company Foundation Medicine, Inc.
Fox Chase Cancer Center-Temple Health G&K Fitness LLC Gainesville Health and Fitness Gap Matching Gift Genentech, Inc. Glen Trading Co. Golub Group LLC Google, Inc Granite CRE, Inc. Guardant Health Inc. Matching Gift Harmony Capital Helsinn Therapeutics (U.S.) Inc. Hillandale Enterprises LLC IBM IMS Health Indiana Endowment Fund Inc/Second Image International Brotherhood of Electrical Workers, AFL-CIO Jazzercise South Bay San Jose Jewish Community Federation JLK Rosenberger, LLP JustGive.org Kale Marketing LLC Kaleo Marketing Kars for Cancer Keiser University Kohl’s Department Stores, Inc. Local Independent Charities America Mark Krueger & Associates, Inc. MAS Solutions Group, LLC Mayo Clinic Medallion Landscape Management, Inc. Medtronic Memorial Healthcare System Memorial Cancer Institute Merck & Co., Inc. MGR Real Estate, Inc Myriad Genetics and Laboratories Novartis Pharmaceutical Corporation Ocean City Police Officers On Demand Publishing LLC Olympian Gulf Properties, Inc Paint Nite Drink Creatively Pasadena Community Center Pepsi Co. Matching Gift Peregrine Pharmaceuticals, Inc. Perkins Coie Pfizer Oncology Pfizer Matching Gift PhRMA Pointless Brewery & Theatre Quality Chain Corp. Rebecca Minkoff, LLC Roseville City School District W.T. Eich Student Boday Rush University Medical Center Saddle Creek SAP Matching Gift SAP Software Solutions Sierra Hematology-Oncology Simply Granola Products Sorta & Ortego, P.A. Operating Account Steven E. Goldin Insurance, Inc. StubHub! Stuhlmuller Investments Thaler & Townsend, Inc. The Estee Lauder Companies Total Quality Logistics Trump, Alioto, Trump & Prescott UBS University of California Davis Upstage Lung Cancer Veracity, INC
S ENI O R E X E C U T IV ES
Bonnie J. Addario Founder & Chair David LeDuc Executive Director Danielle Hicks Associate Executive Director of Patient Services & Programs Andrea Parks Associate Executive Director of Partnerships & Development Guneet Walia, PhD Senior Director of Research & Medical Affairs
CONNECT WITH ALCF 6 5 0 . 5 9 8 .2 8 5 7 1100 Industrial Road #1, San Carlos, CA 94070 L U N G C A N C E R F O U N D AT I O N . O R G facebook.com/BJALCF
@TheALCF
@BeatLungCancer
S TAF F
Debi Beltramo Director of Finance Samantha Cummis Director of Marketing & Communications Kendall Dempsey Event & Database Administrator Leah Fine Director, Centers of Excellence Jennifer Hughes Director of National Events K.C. Oakley Jill’s Legacy Coordinator Anna Plaza Eastern Regional Events Manager Gina Tallerico Event Coordinator Emily Bennett Taylor Spokesperson/Patient Advocate Katie Wilcox Manager of National Events Michele Zeh Manager of Patient Services & Programs
BOARD O F D IR EC TO R S
Bonnie J. Addario Ruth Callanan Trina Dean Dr. Costanzo DiPerna Julie B. Harkins Dr. David Jablons Kelli Kellerman John Matthews James McCullough Deborah Morosini Whitney Spagnola Jaimi Julian Thompson Debbie Tully
Cover Image: James Hall Photography
“ TOGET HER WE WIL L BUILD A BRI DG E TO MAKE LU N G C AN C ER A C HRON IC A L LY MAN AG ED DI SEASE. ” BONN IE J. ADDARI O