National Brain Tumor Society (NBTS)
2015 MEDIA KIT
Table of Contents
About National Brain Tumor Society ...................................................p. 3
About Brain Tumors ..............................................................................p. 8
Media Contact Info & Links ...................................................................p. 11
www.braintumor.org
2 About National Brain Tumor
Society
www.braintumor.org
3 About the National Brain Tumor Society
National Brain Tumor Society’s mission is to find better treatments
and ultimately a cure for brain tumors. As the leader in the fight
against brain tumors, our strategic initiatives and funded programs
aim to improve an understanding of brain tumors to transform
research findings into new and more effective treatments, as quickly
as possible.
To achieve these goals, we foster collaboration with leaders across academia, government, and
the private sector to drive systemic change within all facets of the drug discovery and development
landscape. Through funded research and public policy initiatives, we strive to address all of the
obstacles to getting new and more effective treatments to patients through an integrated approach;
from the very first phases of basic research to the clinical trial and FDA approval process.
The cumulative effort seeks optimize the entire brain tumor research and development system; to
make it a friendlier environment for scientists working in labs to move discoveries to Industry, for
industry to more efficiently finish the pre-clinical work and take promising potential treatments into
clinical trials earlier; and, finally, for companies to have better pathways and mechanisms at their
disposal to speed approval for brain tumor drugs. This will save money, time, and most importantly,
lives.
Our Programs
Clinical Trial Endpoints Initiative – This initiative works with the U.S. Food & Drug Administration
(FDA) to recommend alternative (and additional) clinical trial endpoints to accelerate the pace of
development for drugs, which will provide clinical benefits to brain tumor patients.
Defeat GBM Research Collaborative – Our largest and boldest program to date, this initiative
aims to double the five-year survival rate of glioblastoma multiforme (GBM) patients in just five (5)
years, through robust research collaborations and a novel scientific construct. GBM is the deadliest
form of brain cancer.
Oligodendroglioma Research Fund – This program aims to better understand the origins of
growth for oligodendroglioma, a rare but deadly brain tumor, and apply these findings to advance
the discovery and development of new treatments.
Pediatric Initiatives – These programs seek to address the interrelated barriers to pre-clinical
research and investment in drug development, as well as identify treatment options, which are
safer and minimize long-term side effects on pediatric brain tumor patients. Pediatric brain tumors
are the most prevalent form of cancer in children and young adults under the age of 19, and the
leading cause of death by disease in children under the age of 14.
National Brain Tumor Society is the largest nonprofit dedicated to the brain tumor community in the
United States. And a Charity Navigator Four-Star designated nonprofit.
www.braintumor.org
4 NBTS EXECUTIVE STAFF
SALLY DAVIS
Chief Executive Officer
Sally Davis joined the National Brain Tumor Society as its Chief Executive
Officer in 2014. In this role, she will lead the Organization’s operations to
achieve its strategic goals through targeted research programs, key public
policy initiatives, and financial growth. Prior to joining the National Brain
Tumor Society, she was the National Vice President, Development and
Foundations for the Boys & Girls Clubs of America. Ms. Davis has more than 20 years of
professional experience across both the public and private sector in academia, insurance, and the
pharmaceutical industry. She is also the recipient of the Womenetics POW Award, and the
WNBA’s ATL Dream Inspiring Women Award. Ms. Davis holds a Bachelor’s and Master’s from
Drake University.
DAVID F. ARONS, JD
Chief Public Policy and Advocacy Officer
David Arons is the Senior Director of Public Policy of the National Brain
Tumor Society. In this role, he directs the Organization’s federal and state
public policy efforts and nationwide advocacy program. He previously served as the Director of
Government Relations for the American Cancer Society. He is the author of several books,
including Power in Policy: A Funder’s Guide to Advocacy and Civic Participation, Strengthening
Nonprofit Advocacy, and A Voice for Nonprofits and serves on the National Cancer Institute, NIH
Director’s Consumer Liaison Group
JAMES CHARNLEY
Chief Financial Officer
James Charnley is the Chief Financial Officer of the National Brain Tumor
Society. He joined the Organization in 2012, and effectively manages the
accounting, financial planning, information systems, and human resource operations. He has
managed the finance and operations for several social justice, commercial, and financial
organizations including Benevolent Fraternity of Unitarian Churches and SCM Community
Transportation.
www.braintumor.org
5 SAMANTHA MASTERSON
Chief Advancement Officer
Samantha (Samm) Masterson is National Brain Tumor Society’s Chief
Advancement Officer. In this role, Ms. Masterson works directly with the
Chief Executive Officer to provide vision and leadership to National Brain
Tumor Society’s philanthropy programs, comprising: major gifts, annual
and planned giving, and foundation and corporate relations, including
cause marketing. Ms. Masterson is a proven fundraiser, community builder, and manager of
human capital. Previously, she served in leadership, development, and marketing communications
positions for prominent for-profit and non-profit organizations, such as the American Liver Society
The TJX Companies, March of Dimes, and Alternatives Unlimited, Inc.
•
MARYANN MORGAN
Chief of Staff
Maryann Morgan joined the National Brain Tumor Society in 2015 as Chief
of Staff. Reporting directly to the Chief Executive Officer, Maryann is
responsible for overseeing the operational, administrative, and support
functions of the organization, including IT/IS, human resources, as well as office and facilities
management. Additionally, Maryann provides strategic leadership and executive management of
the organization’s strategic planning process. Maryann is a certified project management
professional with expertise in project delivery, organizational leadership, executive and Board
communications, and personnel management. Prior to joining the National Brain Tumor Society,
Maryann served as Executive and Project Leader to the Office of the President and Office of
Institutional Advancement and Marketing Communications at Morehouse School of Medicine.
CARRIE TREADWELL
Chief Research Officer
Carrie Treadwell joined the Organization in 1998 and serves as the Senior
Director of Research at the National Brain Tumor Society, as well as
Managing Director of the Defeat GBM Research Collaborative, a subsidiary of the Organization. In
these roles, she interacts with leading researchers and institutions to guide the development and
success of key research initiatives including overseeing the Organization’s grant process. She also
serves as a patient advocate for the National Cancer Institute’s Brain Tumor SPORE Program.
www.braintumor.org
6 NBTS BOARD OF DIRECTORS
Officers
Michael J. Nathanson, JD, LLM – Chairman
Cord Schlobohm, DMD – Vice Chair
Michael Corkin – Treasurer
Sarah Durham – Clerk
Members
Jeffrey Kolodin, Chairman Emeritus
Kristen Campana, Esq.
Michael Durbin
John Frishkopf
Richard Genderson
Ken Grey
Sheila Killeen
Chandri Navarro, Esq.
Susan Pannullo, MD
Alison Ross, Esq.
Stephen T. Sadler, JD
Rabbi Eric B. Wisnia
Honorary Board Members
G. Bonnie Feldman
Steve Karol
Scott Memmott, Esq.
Charles B. Wilson, MD
www.braintumor.org
7 About Brain Tumors
www.braintumor.org
8 Brain Tumors By The Numbers
QUICK FACTS
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688,096 Americans are living with a brain tumor.
o 550,042 tumors are benign.
o 138,054 tumors are malignant.
An estimated 68,470 people will receive primary brain tumor diagnoses this year.
o 45,300 will be benign.
o 23,180 will be malignant.
§ Male: 55.2%
§ Female: 44.8%
The average survival rate for all malignant brain tumor patients is only 34.2%.
o Male: 32.6%
o Female: 44.8%
o For the most common form of primary malignant brain tumors, glioblastoma
multiforme, the five-year relative survival rate is only approximately 5% - 10%,
with most patients dying within 15 months.
An estimated 13,770 people will die from malignant brain tumors (brain cancer) this
year.
BRAIN TUMORS IN ADULTS
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The most prevalent brain tumor types in adults:
o Gliomas, such as glioblastoma multiforme, ependymomas, astrocytomas, and
oligodendrogliomas
o Meningiomas
BRAIN TUMORS IN CHILDREN
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An estimated 28,000 children in the U.S. are living with a brain tumor.
An estimated 4,620 new cases of childhood and adolescent primary malignant and
nonmalignant brain and CNS tumors are expected to be diagnosed in 2015.
Pediatric brain tumors are the most prevalent form of childhood cancer in kids under 19.
The average survival rate for all children with malignant brain tumors is 66%.
Brain tumors are the leading cause of cancer-related deaths in children under 14, and
the second leading cause of cancer-related deaths in children and young adults under
20.
It is estimated that, in 2009, a total of 47,631.5 years of potential life were lost due to
brain tumors in children 0-19 years old.
The most prevalent brain tumor types in children:
o Astrocytoma
o Medulloblastoma
o Ependymoma
(cont.)
www.braintumor.org
9 Brain Tumors By The Numbers (cont.)
ADDITIONAL NOTES
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More than any other cancer, brain tumors can have lasting and life-altering physical,
cognitive, and psychological impacts on a patient’s life.
o This means malignant brain tumors can often be described as equal parts
neurological disease and deadly cancer.
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Even benign brain tumors can be deadly if they interfere with portions of the brain
responsible for vital bodily functions.
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There are more than 120 different types of brain tumors, many with their own multitude
of subtypes.
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Despite the amount of brain tumors, and their devastating prognosis, there have only
been four (4) FDA approved drugs to treat brain tumors.
o For many tumor types, surgery and radiation remain the standard of care.
o There has never been a drug developed and approved specifically for pediatric
brain tumors.
o The four approved therapies for brain tumors have provided only incremental
improvements to patient survival, and mortality rates remain little changed over
the past 30 years.
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Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered
the clinical trial evaluation process. 75 failed, and only three (3) were approved (one
conditionally). That is a 25:1 failure ratio in developing new brain tumor treatments over
the past two decades.
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Brain tumors have the highest per-patient initial cost of care for any cancer group, with
an annualized mean net costs of care in 2010 US dollars at well over $100,000.
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In addition to primary brain tumors, each year in the United States and estimated
100,000 – 170,000 individual will be diagnosed with a secondary, or metastatic, brain
tumor.
o Five to 25 percent of cancer patients will develop metastases in the brain.
o Many different cancer types often metastasize to the brain, including:
§ Breast cancer
§ Kidney cancer
§ Leukemia
§ Lung cancer
§ Lymphoma
§ Melanoma (where nearly 50% of cases will metastasize to the brain)
www.braintumor.org
10 Media Contacts & Links
www.braintumor.org
11 Media Contacts & Links
CONTACTS:
Tom Halkin
Senior Manager of Communications
National Brain Tumor Society
[email protected]
617.393.2849
Caitlin Andrews
Policy Resolution Group
[email protected]
202.828.7637
LINKS:
National Brain Tumor Society Homepage: www.braintumor.org
The Grey Soirée Website: www.braintumor.org/dcgala
Frankly Speaking About Brain Tumors: www.braintumor.org/brain-tumor-information
Central Brain Tumor Registry of the United States: www.cbtrus.org
National Cancer Institute Brain Tumor Page: www.cancer.gov/cancertopics/types/brain
Brain Tumor Surveillance, Epidemiology & End Results: seer.cancer.gov/statfacts/html/brain.html
www.braintumor.org
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