ADDARIO LUNG CANCER MEDICAL INSTITUTE

Dedicated to catalyzing and accelerating the

discovery, development and delivery of new and more

effective treatment options for lung cancer patients.

A D D A R I O L U N G C A N C E R

M E D I C A L I N S T I T U T E

• Lung cancer is by far the number #1 cancer killer, taking more lives than breast, prostate and colon cancer combined. • Lung cancer accounts for nearly one third of all cancer deaths. • Approximately 228,000 people will be diagnosed with lung cancer, and 160,000 will die, in the U.S. in 2013.

T H E T R U T H A B O U T L U N G C A N C E R

H O W M A N Y P E O P L E A R E D I A G N O S E D W I T H L U N G C A N C E R ?

#1 cancer killer

in America

• Lung cancer is the leading cause of cancer death in women. • Nearly 78% of new lung cancer diagnoses are in non-smokers.

W H O I S D I A G N O S E D W I T H L U N G C A N C E R ?

#1 cancer killer

of women

• Only 15.8% of those diagnosed with advanced lung cancer will be alive in 5 years - nearly unchanged for the past 30 years. • The 5-year survival rate for breast cancer is 89% and prostate cancer nearly 100%.

5 Y E A R S U R V I V A L R A T E S

H O W M A N Y P E O P L E S U R V I V E L U N G C A N C E R ?

Less than 2 out

of 10 will be

alive in 5 years.

• Approximately $10.3 billion is spent each year in the US on lung cancer treatments alone, yet the federal government invested only $231 million on lung cancer research in 2012. • 78% of new lung cancer diagnoses are in non-smokers, yet nearly all government funding is directed toward tobacco cessation and education programs. • Disproportionately low federal investment in lung cancer research, particularly when measured on a per patient death basis. .

T H E T R U T H A B O U T L U N G C A N C E R

W H A T I S B E I N G I N V E S T E D I N R E S E A R C H A G A I N S T L U N G C A N C E R ?

U.S. government

spent 20x more

research funding

on breast cancer

and 10x more

on prostate

cancer.

• Increasing understanding of the genetic complexity and variety of types of lung cancer. • Some progress towards personalized therapies for advanced NSCLC, but still no significant improvements in overall survival. • As a result of a lack of funding and attention for this deadly cancer, no major therapeutic advances against earlier stages of non-small cell lung cancer (NSCLC), or any stage of small cell lung cancer (SCLC). • No major therapeutic advances over past 40 years.

W H A T P R O G R E S S I S B E I N G M A D E A G A I N S T L U N G C A N C E R ?

Genetic

complexity

presents

challenges.

U . S . F E D E R A L R E S E A R C H I N V E S T M E N T P E R P A T I E N T M O R T A L I T Y

Bonnie J. Addario was first diagnosed with advanced stage lung cancer in 2004 and, eventually beating the disease and the odds, has since dedicated herself to helping other patients and families. She founded two “sister” non-profit organizations, the Lung Cancer Foundation (LCF) in 2006 and the Addario Lung Cancer Medical Institute (ALCMI) in 2008, to bring the weight and urgency of patients’ voices to accelerate and focus research on improved patient outcomes.

A B O U T A D D A R I O L U N G C A N C E R M E D I C A L I N S T I T U T E

P A T I E N T- F O U N D E D , P A T I E N T- F U N D E D , P A T I E N T- F O C U S E D

The Addario

family have

personally donated

millions of dollars

and countless

volunteer hours to

advance research.

Through empowering and educating patients, funding cutting-edge research, building strategic collab-orations and raising public awareness, LCF’s goal is to transform lung cancer into a manageable, chronic disease and ultimately to find a cure.

L U N G C A N C E R F O U N D AT I O N ( L C F )

R E S E A R C H– supports and invests in genetic testing, therapeutic discovery, targeted treatment and early detection. P A T I E N T S E R V I C E S– provides a road map to guide patients and families, and a support system to anchor them, including educational resources, latest research news, and one-on-one answers to questions along with personal advice. A W A R E N E S S– our message is both urgent and simple: patients hold the key to unlocking the mystery of lung cancer and they must have a “seat at the table” with researchers and clinicians. Anyone can get lung cancer.

B U S I N E S S D E V E L O P M E N T– seeks to engage corporate partners, major donors and foundations who support our initiatives and invest in our mission.

J I L L ’ S L E G A C Y– an advisory board made up of empowered young professionals personally touched by lung cancer.

A B O U T A D D A R I O L U N G C A N C E R M E D I C A L I N S T I T U T E

Academic Center Members Catalan Institute of Oncology, Barcelona, Spain Dana-Farber Cancer Institute, Boston, MA Institut Gustave Roussy, Villejuif, France New York University, New York, NY Ohio State University, Columbus, OH U. of California at Davis, Sacramento, CA U. of California San Francisco, San Francisco, CA U. of Southern California, Los Angeles, CA University of Torino, Turin, Italy Vanderbilt University, Nashville, TN Community Hospital Members Alta Bates Medical Center, Berkeley, CA Boca Raton Regional Hospital, Boca Raton, FL El Camino Hospital, Mountain View, CA Hoag Hospital, Newport Beach, CA LA County Hospital, Los Angeles, CA Lahey Clinic Hospital, Burlington, MA Northside Hospital, Atlanta, GA Palo Alto Medical Foundation, Palo Alto, CA Tahoe Forest Cancer Center, Truckee, CA

Our mission is to

rapidly make

lung cancer

survivable.

ALCMI is the only international consortium advancing lung cancer research by combining scientific expertise found at academic institutions with patient access through our network of community cancer centers – enabling novel research studies that are otherwise not feasible. ALCMI is an innovative collaborative model, combining cancer research with business best practices.

R E V O L U T I O N I Z I N G L U N G C A N C E R – B R I N G I N G N O V E L R E S E A R C H

T O T H E C O M M U N I T Y

•

E F F E C T I V E / E F F I C I E N T / R E S U L T S - O R I E N T E D :

ALCMI invests a nearly unheard-of 89 cents out of each dollar raised directly towards our research initiatives. This is achieved by leveraging shared administrative staff and economies of scale with our sister foundation the LCF, and even more so by the donations of time, expertise and resources of ALCMI’s member institutions, scientists and clinicians. •

I N D U S T R Y P A R T N E R S H I P S :

ALCMI collaborates with biopharmaceutical companies and clinical laboratories to bring innovations to patients. •

B R O A D G E O G R A P H I C O U T R E A C H :

Linking 19 of the world’s leading academic and community cancer centers from the United States, France, Italy and Spain.

89% of funds

raised are directly

invested in clinical

A B O U T A D D A R I O L U N G C A N C E R M E D I C A L I N S T I T U T E

ALCMI overcomes systemic barriers to collaboration in order to accelerate the translation/delivery of discoveries to patients. ALCMI combines the best business and clinical practices with the sense of urgency of a patient-founded non-profit. The result – an international, contractual consortium implementing novel basic and translational research studies.

R E V O L U T I O N I Z I N G L U N G C A N C E R – E L I M I N A T I N G T H E “ S I L O ”

E F F E C T I N R E S E A R C H

Breaks down barriers

and accelerates

research.

•

S C I E N T I F I C L E A D E R S H I P B O A R D :

Provides scientific guidance to ALCMI, leading the way towards accelerated development of more effective therapeutic options for patients.

•

C L I N I C A L O P E R A T I O N S :

Dedicated, centralized staffing resources accelerate consortium research study development and delivery. •

C L I N I C A L T R I A L R E C R U I T M E N T :

Less than 5% of

American adults participate in cancer clinical trials, resulting in slow and inefficient studies. ALCMI helps address this significant obstacle to progress by collaborating with community cancer centers for improved access for patients.

•

B I O R E P O S I T O R Y :

Addressing an unmet need, ALCMI created a centralized repository of matched tumor tissues and blood samples uniformly collected and annotated with patient treatment and

outcomes data.

•

D A T A S Y S T E M S :

ALCMI centralizes biological specimen tracking from initial collections through the course of treatment/outcomes and maximizes data access and scientific value. •

C E N T R A L I Z E D C O N T R A C T I N G :

ALCMI acts as the lead contracts negotiator for the consortium, thereby accelerating collaborative research projects.

Unique scientific,

operational and

business expertise.

Dedicated research

capabilities.

C O L L A B O R AT I V E A DVA N C E D S TAG E T I S S U E L U N G C A N C E R N E T WO R K

( C A S T L E ) : L A U N C H E D J A N UA RY 2 0 1 0

The CASTLE study collects matched tissues and bloods from advanced stage lung cancer patients. In contrast to other groups’ research initiatives which are limited in scope and duration, ALCMI’s longitudinal collection of tumor tissues, bloods and clinical data serves as a foundational resource to enable scientists to ask and answer the next scientific questions.

I N V E S T I G AT I N G H E R E D I TA RY R I S K F R O M T 7 9 0 ( I N H E R I T ) : L A U N C H E D

D E C E M B E R 2 0 1 2

A small number of people are born with a DNA mutation in the EGFR gene called T790M, which has been identified in some families suffering from lung cancer. This study hypothesizes the reason this mutation occurs is not because it arose in the cancer cells but rather because it was in the patient’s genes, and thus why lung cancer developed in the first place in such patients.

G E N O M I C S O F YO U N G L U N G C A N C E R : J U N E 2 0 1 3 L A U N C H

In cancers such as breast cancer and leukemia, research has

clearly demonstrated that diagnosis at a younger age is

associated with a distinct biology and natural history; however, the biology of lung cancer in the young (under 40 years old) has not been studied. This study uniquely employs next-generation genomic sequencing to determine whether young lung cancers harbor a distinctive spectrum of genetic mutations, indicating a need for an individualized management approach.

Leveraging ALCMI’s research infrastructures, we have developed and implemented a strategically focused portfolio of innovative basic and translational research projects. All projects must clearly demonstrate benefits for patients, and address unmet needs.

A L C M I R E S E A R C H P R O J E C T S

PAT I E N T B E N E F I T

Free molecular testing for

all enrolled patients results

in more informed therapeutic

decision-making by patients

and their physicians.

PAT I E N T B E N E F I T

Collecting a registry of

high risk families lays the

groundwork for lung

cancer screening and

prevention advances.

PAT I E N T B E N E F I T

Study of this biologically

unique population should

allow the identification of

new genetic sub-types of

lung cancer deserving of

novel, targeted treatment

strategies.

David P. Carbone, MD, PhD, Professor in the Division of Medical Oncology; Chair of ALCMI Scientific Leadership Board

Ohio State University

S C I E N T I F I C L E A D E R S H I P B O A R D

Pasi A. Jänne, MD, PhD, Associate Professor of Medicine at Harvard Medical School; Scientific Director, Belfer Institute for Ap-plied Cancer Science at Dana-Farber Cancer Institute

Dana-Farber Cancer Institute

David R. Gandara, MD, Professor of Medicine, Associate Director of Clinical Research and Director of Thoracic Oncology

University of California, Davis

David M. Jablons, MD, Professor & Chief of Thoracic Surgery, Ada Distinguished Professor of Thoracic Oncology, Program Leader of Thoracic Oncology at the UCSF Cancer Center University of California San Francisco

Ite Laird-Offringa, PhD, Associate Professor of Surgery and of Biochemistry and Molecular Biology at Norris Comprehensive Cancer Center, Director of the Program in Biomedical and Biological Sciences

S C I E N T I F I C L E A D E R S H I P B O A R D

Giorgio V. Scalgiotti, MD, PhD, Chair and Professor of Respiratory Medicine, Professor of Thoracic Oncology University of Torino (Italy)

Rafael Rosell, MD, PhD, Scientific Director for Oncology; Chief of Medical Oncology Service at Hospital Germans Trias I Pujol; Chairman of Pangaea Biotech, SA; Professor at University of Barcelona

Catalan Institute of Oncology (Spain)

Jean-Charles Soria, MD, PhD, Professor of Medicine and Medical Oncology at South-Paris University

Institut Gustave Roussy (France)

Harvey I. Pass, MD, Professor of Thoracic Oncology, Vice-Chair Research, Department of Cardiology and Division Chief of General Thoracic Surgery

Founder of LCF; Chair of Board of Directors

Founder of ALCMI; Member, Board of Directors & SLB

Bonnie J. Addario is a 9 year advanced lung cancer survivor and founder of two “sister” foundations—the Lung Cancer Foundation (LCF) and the Addario Lung Cancer Medical Institute (ALCMI). Prior to her diagnosis with cancer in 2004, Bonnie served as the president of Commercial Fueling Network and also Olympian Oil Co., and was the first female president of the California Independent Oil Marketers. Bonnie serves on the Sequoia Hospital Foundation Board and Southwest Oncology Group Lung Committee, and is Vice Chair of the UCSF Thoracic Cabinet.

S E N I O R L E A D E R S H I P

Chair of Board of Directors; Interim CEO

Tony Addario, formerly an executive in the computer networking industry, is Chairman of the Board and interim CEO of ALCMI. Prior to helping launch ALCMI, Tony spent a successful career helping build several technology leaders and is on the advisory board for several Silicon Valley start-ups. He’s a retired vice president for Bay Networks and also Juniper Networks. He also spent several years as a senior technical advisor for NASA including the Manned Space Flight Network. He has served on several boards including the Thunderbird Lodge Preservation Society, the Green Hills Country Club, and Sierra Nevada College.

President & Chief Operating Officer

Steven W. Young joined ALCMI in late 2008. He had previously served as the Executive Director of the Multiple Myeloma Research Consortium. Steven had directed the development and successful launch of several clinical research for-profit business models and served as Director of the Clinical Research Centers at Mount Sinai School of Medicine and Cornell University College of Medicine. Earlier still, Steven performed scientific research in pathology, virology and neurosurgery at Cornell, Rockefeller and Columbia Universities, respectively.

Director of Clinical Operations and Communications

Alicia Sable-Hunt, RN, MBA joined ALCMI in 2009. Previously, Alicia established and led a number of oncology product and life sciences consulting firms, including support for non-profit organizations’ develop-ment of translational medicine programs. Alicia has focused on the fields of bedside nursing and clinical research, such as managing clinical trials and biobanking operations for the Multiple Myeloma Research Consortium. Alicia was named to FasterCure’s Who’s Who of Biobanking.