the lung times - Bonnie J. Addario Lung Cancer Foundation

FEBRUARY 2014 VOLUME 2, ISSUE 1
T H E LU N G T I M E S
B OA R D A ND STA K EHO LD ER REVIE W
SPECIAL EDITION: 2013 ANNUAL REPORT
MESSAGE FROM BONNIE J. ADDARIO, FOUNDER & CHAIR
Powering Progress & Change
Dear ALCF Board Members and Stakeholders,
This issue of The Lung Times includes our 2013 Annual Report.
The data points in this Annual Report (on page 2) provide a
snapshot of how we powered progress, innovation and
change in 2013 through empowering and educating patients,
extending the frontiers of research, impacting communities,
stewarding resources, and raising awareness through advocacy.
The winds of change are blowing in lung cancer treatment and research
and we are “Building Windmills”…
Lung cancer patient survivability is at a tipping point and change is paramount.
Lung cancer is a global epidemic and we need a global effort. Genomics and
personalized medicine are here to stay.
With our vision to make lung cancer a chronically managed disease by 2023, we
are 9 short years away from a survival rate of 80% and above. Just like breast,
colon and prostate cancer. Currently, the survival rate for lung cancer patients
is 16.7% at best after 5 years.
2013 is the year that ALCF threw down the gauntlet that will power the
progress needed to achieve this goal.
We are building an ARMY of fighters including pharma, biotech, life sciences,
payers, regulators, clinicians and, most importantly, Smart Patients.
Join us. Fund us. Fight with us.
With much love,
Bonnie
P.S. Our heartfelt gratitude to Evy Schiffman for making this annual report
possible and for countless hours and talents in assisting with all of our
communications.
"When the winds
of change blow,
some people build
walls and others
build windmills."
—Chinese Proverb
2013 ANNUAL REPORT
(pre-audited financials)
Fund Allocation: 90% of every dollar donated
supports programs, services, outreach & research!
Administration
10%
30%
45%
Research
(ALCMI & Research
Initiatives
Patient Programs
& Services
15%
Awareness & Outreach
REGISTER TODAY
FOR A 5K IN YOUR CITY
lu n gc an c er fou nd a tio n. o rg
45% Patient Programs & Services
Five Key Components: Bringing Hope HomeLiving Room Support
Group/Speaker Series; Patient Education Handbook, Navigating
Lung Cancer: 3600 of Hope; Mobile APP; Education Library (Video
Archive); Community Hospital Centers of Excellence
15% Awareness & Outreach
Website; The Lung Times Newsletter; Patient Education Resource
Centers at National Race Series; Print and Social Media Campaigns
30% Research (ALCMI & Research Initiatives)
CASTLE; INHERIT T790M; Genomics of Young Lung; Scientific
Advisory Board Grants (Year 2 funding)
10% Administration
Income: 3.5 million raised
T U NE IN LIV E VI A U S TR E AM
TO THE MONTHLY LU NG
CANCER LIVING R O O M O R
VIEW OUR LIFES AVI NG
VIDEO COLLECTI O N
lu n gc an c er fo u nd a tio n. o rg
20%
Individual Donors
($50-$250)
40%
Industry Partners
40%
Individual Major Donors
($250 & above)
Income raised thru:
10%
Foundations
15%
Individual Donors
20%
Corporations/
Industry
55%
National Events
(5K series, gala, golf,
affiliates)
Media Impressions: 1,120,332,946 (TOTAL)*
•
•
•
•
FROM SCOTT SANTARELLA,
PRESIDENT & CEO
Raising Awareness through Advocacy
Advocacy takes many forms in the 21st century. ALCF
leveraged high-visibility events and activism, high-tech
platforms, and grassroots organizing in 2013 to raise
awareness about lung cancer.
2013 Patient and Community
Outreach and Advocacy:*
• Website: 85,297 annual visits, 62,222 unique visitors
• ALCF Lung Blog: 15,167 annual visits,
12,975 unique visitors
• E-Communications (The Lung Times Newsletter,
Events, Announcements, etc): 35,946 subscribers
• YouTube & Vimeo: 116,813 views since June 2010
• Outdoor Billboard Campaign (SF): 9.18 million
views monthly
• Signature Events (National Walk/Run Series,Gala, etc):
10,000 participants and donors
• Facebook: 34,428 likes
• Facebook Reach: 24,708 weekly average
• Twitter: 630 followers
• Lung Cancer Living Room Support Group/Speaker
Series Live Stream and Patient Education Video
Archive Views (post-Living Room Live Stream):
456,825 views in 142 countries
• Patient Education Handbook: 2,500 distribution
*Some data (i.e. Patient Database) may reflect historical
aggregate figure.
News Release Impressions: 1,052,470,817
Earned Media Placement (articles, TV,
online): 67,862,129
Broadcast TV (representative sample)
–Steve Harvey Show (National)
–ABC / WFAA-TV (Dallas-Ft Worth, TX)
–ABC / KGO-TV News (SF-Oakland, CA)
–NBC / KNTV Bay Area (SF, CA)
Online Print (representative sample)
–The Atlantic (Washington, DC)
–Genome Web (National)
–Comcast SportsNet (Northern CA)
–Dallas Morning News
*Data based on figures tabulated by Perr y Communications
Group, Inc., Dec 2013. Info included represents partial list of
outlets where coverage appeared.
Speaking Engagements, Panels,
Conferences, Professional Affiliations,
Awards*
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Patients Powering Progress, International
Association for the Study of Lung Cancer, Sydney,
Australia
Boehringer Ingelheim
Bristol-Myers Squibb, Patient Advocate
SF Business of Personalized Medicine, Life
Technologies
GTX, Inc.
Caris Life Sciences
Current Vice-Chair, University of CA, San Francisco,
Thoracic Cabinet
WebMD Health Hero Award
League of Women Voters Honoree, Women Who
Could Be President
Personalized Medicine Coalition, Washington, DC
Research America, New York
American Association for Cancer Research
The A2A Alliance: Leading the Way from Adversity
to Advocacy
Faster Cure’s Train/The Redstone Acceleration and
Innovation Network, Washington, DC
*Partial list based on activities of founder or other organization
principals.
Read about how ALCF made news in 2013!
Go to:
http://www.lungcancerfoundation.org/media/media-coverage/
• A very special thank you to Caren Gorenberg,
lung cancer survivor and founder of the Gainesville
"Run Amuck with the Duck 5K." Without dedicated
affiliates and independent fundraisers throughout
the country led by people like Caren, our
lifesaving work would not continue to grow.
Meet the people. See the faces. Learn the Stories.
Be inspired!
FROM ANDREA PARKS–
EVENTS & MARKETING
Impacting Communities
In 2013 ALCF events made an impact in communities
throughout the nation by generating awareness
about lung cancer. The number of people participating
and the dollars raised tell part of the story, but each of
our signature events (whether Gala, Golf or 5K) also
tells a story of great heart, hope and inspiration in
the faces and stories of the patients and families
who attended.
2013 Signature Events:
• 10,000 people total, all of whom were donors from
$20 to thousands of dollars, attended our signature
events.
• ALCF events raised more than $2.2 million (compared
to $1.8 million raised in 2012).
• Held 12 walk/run 5K events nationwide (Gainesville,
FL, Berkeley, CA, Columbus, OH, Georgetown
University, Washington DC, Chicago, IL, Philadelphia,
PA, Dallas, TX, Narragansett, RI, Ithaca, NY, San
Francisco, CA, Orange County, CA, Phoenix, AZ)
thanks to the support of Pfizer and Life Technologies.
• Launched our first-ever Patient Education Resource
Center at our San Francisco event with schedule to
continue such centers at multiple 2014 5K events.
• Raised an incredible $960,000+ at our annual Simply
the Best Gala, making this joyous event our single
most successful fundraiser to date. Hope and
celebration filled the air as survivors shared their
stories and inspired us all! Patients and caregivers,
all heroes, lit up the room (and the dance floor!)
showing us the individual and collective power of
courage, tenacity and hope!
• Partnered with Hank Baskett III who stepped up
to the tee with his Dad at our “Drive it off the Earth
Golf Tournament” and at the Hank Baskett Classic
Golf Tournament.
• “Simply the Best” Annual Gala
http://tinyurl.com/ALCFGala8
• “Drive it off the Earth” Golf Tournament
http://tinyurl.com/ALCFGolf8
• “Your Next Step is the Cure” 5K Walk/Run Series
http://www.lungcancerfoundation.org/events/
CALL TO ACTION: Participate in an event near you!
CALL TO ACTION: You or someone you know can
raise awareness and funds with an independent
fundraiser. Contact Jennifer Hughes.
jhughes@lungcancerfoundation.org
FROM DANI GASPARINI
PHILANTHROPY CORNER
Stewarding Resources
2013 was a banner year in terms of funds raised,
number of donors, new funder support, partnerships
and initiatives launched.
Thank You to our 2013 MAJOR
PARTNERS!
• New funder Bristol-Myers Squibb awarded ALCF
a grant to fund immuno-oncology education as it
relates to lung cancer. We are thrilled to collaborate
with other BMS grant recipients – Lungevity, Cancer
Support Community, Society for Immunotherapy
of Cancer (SITC) – in supporting advocacy and
education about immuno-oncology.
• Genentech’s continued support for patient education
and services allowed us to increase patient reach
by 20% through new tools (i.e. Patient Handbook)
and print and social media.
• Genentech and Safeway Foundation funding for the
Living Room Support Group and Speaker Series
broadened our reach to 456,825 views in 142 countries
worldwide.
• New funders Eli Lilly and Company and Celgene
joined longtime funders Genentech, Pfizer, Biodesix,
and Safeway Foundation to support a special 3-part
Living Room Series: The Next Decade in Lung Cancer,
a discussion by leaders from medicine, research,
industry, technology, advocacy organizations, and
patients of how to make lung cancer a chronically
managed disease within 10 years.
• Celgene, Myriad, and Julie Harkins supported
development of our new Mobile APP for our Patient
Education Handbook and Patient Tools.
• Longtime funder Boehringer Ingelheim awarded us
funds to establish a year-long partnership to advance
patient services and raise overall awareness about
lung cancer.
• On-going funder Life Technologies and Pfizer
supported our new Patient Education Resource
Centers at our 5K events and Life Technologies
is makingpossible the translation of the Patient
Education Handbook into Chinese.
Thank you for being a philanthropist
in the fight against lung cancer!
ALCF's donor base is no mystery. The majority of our
donors are individuals like you affected by lung cancer,
either personally, through a family member or dear
friend. Whether your donation is $25 to provide a
patient education handbook to someone fighting the
disease or $250,000 to fund a research study like
T790M, EVERY DONOR, EVERY GIFT brings us one
step closer to our goal of making lung cancer a
chronically managed disease within 10 years. Our
heartfelt thanks for making possible the patient
ervices, advocacy efforts and research initiatives
of the Bonnie J. Addario Lung Cancer Foundation.
CALL TO ACTION: Consider an ongoing $25 monthly
donation and share news with family and friends who
would like to stand “side by side” with a patient by
providing our Patient Education Handbook –
Navigating Cancer: 360º of Hope – free of cost.
In addition to our returning and new industry partners
above we also want to thank all of our individual
donors. All gifts are significant to us and are significant
to the people making them. We are so blessed to have
such a committed group of donors. We also thank our
non-industry companies who have made significant
gifts: The Garland Company, Fry's Electronics,
Geoffrey's Jewelers, Quality Chain Corp, BAINCO,
Brocade, Harmony Capital LLC, RetailMeNot,
Trump, Alliotto & Prescott just to name a few.
CALL TO ACTION: If you know staff or board
members affiliated with any companies in the lung
cancer space who have a philanthropic foundation,
we would love to talk with them about ALCF.
Please contact Dani Gasparini.
dgasparini@lungcancerfoundation.org
New Online Community for Lung Cancer
Patients:
FROM DANIELLE HICKS–
PATIENT SERVICES
Empowering and Educating Patients
ALCF services and programs reached patients and
families around the world in 2013. Here’s how:
Lung Cancer Living Room Support
Group and Speaker Series Live Stream
and Patient Education Video Archive
• 456,825 views in 142 countries
Patient Education Handbook:
• 2,500 copies distributed
Community Hospital Centers of
Excellence:
LU
NG
CANCER
FO
U
E
N
TE
C
C
E
ION
ADD
AT
AR
D
O
N
I
• 100% of enrolled patients (190) have had molecular
testing.
• Diagnosis-to-treatment time improved from national
average of 40+ days to 14.5 days.
• 61% of enrolled patients have had Tumor Board
review vs. 15% pre-program.
• Patient satisfaction very good at 100%.
• 26% of patients treated diagnosed at Stage 2B
or lower.
LE
R O
F EXCEL
N
ALCF partnered with “Smart Patients” to launch a free
online platform for patients and families to connect
with, learn from, and talk to each other about
treatments, clinical trials, and the latest science. Using
lung cancer as its “beta test” disease for the platform,
ALCF worked with “Smart Patients” to develop the site,
get patient feedback about their needs, etc. In 2014
our partnership will include informing patients and the
medical community about the site, as well as directing
patients to sign-up and benefit from this new platform
helping them to be smarter patients!
http://tinyurl.com/ALCFsmart
New Collaborations Power Progress
and Innovation:
ALCF has established a partnership with “Cancer
Commons” for an online patient registry to advance
research for a cure. Through Donate Your Data (DYD),
our collaborative initiative, patients provide
researchers with the valuable information that they
need to understand cancer biology and treatment
and develop new therapies to target a patient's
specific tumor type. By donating data through our
easy on-line intake form, patients and scientific
research benefit.
https://patients.cc/#home
CALL TO ACTION:
•
Let people know about the Living Room series!
Invite those in your network to attend in person
or remotely. On February 18, don't miss the
advocacy groups discussing joint efforts to make
lung cancer a chronically managed disease
in the next 10 years. www.lungcancerlivingroom.org
•
Download ALCF’s Patient Education Handbook
APP which launched on Jan 1, 2014. Share with
others especially lung cancer patients who
can use this valuable tool.
Consortium Projects Underway:
• CASTLE: molecular diagnostic/prognostic testing
of tumor and blood; centrally collects tumor, genetic
and blood samples with outcomes data.
–Enrollment (as of Dec 31, 2013) = 99 subjects
(out of 250 targeted)
• INHERIT EGFR T790M: identifies specific inherited
gene alterations that raise the risk of developing lung
cancer in patients and family members.
http://tinyurl.com/INHERITVIDEO
–Enrollment (as of Dec 31, 2013) = 20 subjects (out
of 100 targeted)
FROM STEVEN YOUNG–ALCMI
Extending the Frontiers of
Research & Innovation
The Addario Lung Cancer Medical Institute
(ALCMI) is the only international, contractual
consortium advancing lung cancer research by
combining scientific expertise found at our network
of academic institutions with patient access through
our network of community cancer centers. ALCMI
directly facilitates and drives clinical research
collaborations through our shared infrastructures
and centralized study development/management
across our member institutions/organizations.
Our projects focus on disease biology, early
detection, genetic testing, therapeutic
discovery, and targeted treatments.
Launching Q1 2014:
• Genomics of Young Lung Cancer: will determine
whether lung cancer in young patients exhibits genetic
mutations for targeted treatment.
–Enrollment Goal = 60 subjects
–Highlighted in a recent article in “The Atlantic”
http://tinyurl.com/YoungLungAtlantic
CALL TO ACTION: Please help us to extend the lives
of patients. Provide project funding support today at
www.alcmi.net.
ALCMI COLLABORATING CENTERS AS OF DECEMBER 31, 2013
9
4
11
17
15
18 1
14
13
A5
8 19
6
16
12
B
7
France
Italy
3
Spain
20
10
2
1. Alta Bates Summit Medical Center
(Oakland, CA)—Andrew Greenberg, MD, PhD
11. New York University
(New York, NY)—Harvey Pass, MD
2. Boca Raton Regional Hospital
(Boca Raton, FL)—Edgardo Santos, MD
12. Northside Hospital System
(Atlanta, GA)—Howard Silverboard, MD
3. Catalan Institute of Oncology
(Barcelona, Spain)—Rafael Rosell, MD, PhD
13. Ohio State University
(Columbus, OH)—David Carbone, MD, PhD
4. Dana-Farber Cancer Institute
(Boston, MA)—Pasi Janne, MD, PhD
14. Palo Alto Medical Foundation
(Palo Alto, CA)—Ganesh Krishna, MD
5. El Camino Hospital
(Mountain View, CA)—Ganesh Krishna, MD
15. Tahoe Forest Cancer Center
(Truckee, CA)—Larry Heifetz, MD
6. Hoag Hospital
(Newport Beach, CA)— Doug Zusman, MD
16. Vanderbilt University Medical Center
(Nashville, TN)—Leora Horn, MD
7. Institute Gustave Roussy
(Paris, France)—Jean-Charles Soria, MD, PhD
17. University of California at Davis
(Sacramento, CA)—David Gandara, MD
8. LA County Hospital
(Los Angeles, CA)—Barbara Gitlitz, MD
18. University of California, San Francisco
(San Francisco, CA)—David Jablons, MD
9. Lahey Hospital & Medical Center
(Burlington, MA)—Paul Hesketh, MD
19. University of Southern California
(Los Angeles, CA)— Ite Laird-Offringa, PhD
& Barbara Gitlitz, MD
10. Memorial Health System
(Hollywood, FL)—Louis Raez, MD
20. University of Torino
(Torino, Italy)—Giorgio Scagliotti, MD, PhD
ALCF Community Hospital Centers of Excellence
A. El Camino Hospital (Mountain View, CA)
B. Florida Hospital Tampa (Tampa, Florida)