American Brain Tumor Association
Headlines
SPRING~ SUMMER 2011
VOLUME 38, NUMBER 1
A Catalyst in Discovery:
ABTA-Supported Science is Changing
the Future of Brain Tumors
hile it often takes years for findings to become
incorporated into scientific methodology, and
ultimately, patient care, several ABTA-supported projects are already impacting the future of brain tumor
research. Promising projects, with the potential to
change the brain tumor paradigm, include studies on:
W
Genetic risk factors for brain tumors
Gliogene – Gliogene (short for glioma gene) is a fiveyear, international study to determine potential genetic
risk factors in families
of patients diagnosed
with a glioma – the
most common type of malignant primary brain tumor.
The project, funded by the National Cancer Institute
with support from ABTA, screened more than 14,000
patient-family histories at 15 medical institutions (the
Gliogene Consortium) in the U.S., Israel, Denmark,
Sweden and the United Kingdom. The effort, started in
2007, has yielded information from 855 families with
two or more relatives with reported gliomas.
To date, it is known that:
N Continued on page 8
“I may look OK, but I’m not”
The Unique and Often Unmet Needs of Non-Malignant Brain Tumor Patients
hen Denise Corrin was recovering from surgery to
remove a non-malignant brain tumor, her physical
therapist asked her if she could walk up a flight of stairs.
Corrin, who was in good shape physically and a self-professed over-achiever, ran up and down two flights of
stairs. Soon after, she was released from the hospital.
Two years later, Corrin, 55, of Long Beach, Calif.,
feels like she is just now starting to recover, with the
help of a neuropsychologist, from the physical and
emotional effects of a meningioma.
“What they didn’t consider was the psychological
part. How someone comes back into the real world after
suffering what I suffered,” said Corrin. In the two years
preceding her brain tumor diagnosis, Corrin lost jobs,
W
was divorced, arrested for drunk driving (she later
passed a breathalyzer test) and was misdiagnosed before
she was finally taken to the emergency room in 2008.
And while many of her behavioral and cognitive symptoms subsided following the surgical removal of a 5-centimenter tumor from the right side of her brain, she still
struggles with hand-eye coordination, ataxia (lack of
muscle coordination), depression, anxiety and fatigue.
Corrin’s friends and family expected her to resume
her old life, and to go back to being the same person
she was before the brain tumor.
“People couldn’t tell anything was different, but I
could,” said Corrin.
N Continued on page 3
“Friends and family members
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FROM THE
EXECUTIVE DIRECTOR
pring is a very active season for all of us at the ABTA
which you’ll see reflected in this current issue of
Headlines. In addition to our seasonal efforts, the ABTA
will begin implementing program, services, operational
and facility upgrades and refreshes. These enhancements
are based on more than a year of evaluation and assessment to determine how we can better meet the needs of
our constituents. Let me share some highlights:
As we approach our fiscal year end in June, we will be
announcing a new class of research grant recipients
whose projects have been recommended for ABTA
funding following rigorous review by our expert scientific advisory panel. This year we will be awarding 26
fellowships, 12 Discovery Grants, 2 Translational Grants
and 15 Medical Summer School Fellowships to young
investigators hard at work unlocking the mysteries surrounding brain tumors in some of the continent’s most
prestigious medical centers and research labs. We are
funding more researchers and have expanded funding
in three of the four grants categories.
This is the beginning of the fundraising event season.
In addition to more than 100 events being coordinated
by volunteers across the country for the benefit of
ABTA, our annual Path to Progress 5K Run/Walk will
take place on May 14 at Chicago’s Soldier Field. In just
six years, this event has grown to attract more than
6,000 participants and is expected to surpass the $1
million mark this year. The lakefront event is familyfocused and boasts many new activities including a
picnic and live band performance. We are excited to be
officially introducing our recently refreshed logo on tshirts and signage at this signature event.
In addition to a new look, we will also soon have a
new location. Once we cross the Path to Progress finish
line, we head back to the office to pack up and prepare
for a June 1 move. After more than 20 years at our current location in suburban Des Plaines, Ill., ABTA staff
is looking forward to occupying larger space in a newer
building in the city of Chicago yet just a few miles east
of our current site.
S
2
HEADLINES
SPRING ~ SUMMER 2011
We kick off our new fiscal year in July with our
Patient-Family Connections Meeting & Retreat.
This event, scheduled for July 29-30, is an ABTA tradition and reflects our mission in action. Over the course
of two days, attendees will hear from some of the
nation’s leading medical and scientific brain tumor
experts, and enjoy a perfect setting for relaxing,
restoring and connecting with others sharing similar
diagnoses and experiences.
Wendy Diez, whose moving story of how a brain
tumor diagnosis impacted her young family, is featured
in our spring appeal, will share her story at the patient
meeting.
We also will be hosting an Annual Meeting Dinner
on July 29 in conjunction with the two- day patientfamily event. Attendees will have the opportunity to
hear from featured speaker Victoria Reggie Kennedy,
wife of the late Sen. Edward Kennedy who passed away
a year ago from a brain tumor.
Over the summer we will continue to incorporate
our new logo in updated versions of our brain tumor
publications. By fall, we will debut a redesigned web
site with features that we believe you will find even
more helpful in your search for knowledge and understanding of brain tumor treatments and care, of the
support services available to you through the ABTA,
and of all ways in which the ABTA is working to move
the field forward.
The ABTA’s efforts — over the past several months
and in the months ahead — to refresh and upgrade our
services, programs, operations and facilities — are necessary to strengthen our foundation and fulfill our
mission. Poised for growth, and with your help, we will
improve, extend and, ultimately, save lives.
Elizabeth M. Wilson
N I may look OK but I’m not: continued from page 1
may assume that just because the brain tumor has been
removed that all the problems have been solved,” said
Paula Sherwood, R.N., Ph.D., C.N.R.N., associate professor, University of Pittsburgh Schools of Nursing
and Medicine. “Patients are happy it’s not malignant;
happy it’s been taken out. And some do very well with
few side-effects. But there are others who have significant side-effects.”
Even though a benign brain tumor is not cancerous,
the diagnosis can result in damaged brain tissue from
the tumor itself and/or the treatment which typically
involves surgery and sometimes radiation and
chemotherapy. Related symptoms, which may be longterm and even life-threatening, can include seizures;
hormonal disorders; difficulty with memory, thinking
and hearing; visual difficulties; fatigue; and weakness
or coordination difficulties in the arms and legs.
According to the Central Brain Tumor Registry of
the United States (CBTRUS) non-malignant, or
“benign,” brain tumors (typically meningiomas,
ependymomas and pituitary tumors) account for 65
percent of primary brain tumor diagnoses (most often
in women) each year. An estimated 40,470 Americans
will receive a benign brain tumor diagnosis in 2011.
“Because of a lack of research and data, we have no idea
whether people with benign tumors are able to return to
work, engage in the same social situations and/or resume
their familial obligations,” said Sherwood.“Something as
simple as balancing the checkbook – depending on where
the tumor is located – may be something that someone
can’t do anymore.”
“Benign is a tough word. It conjures up the
sense that everything is going to be
OK,” said Terri Armstrong,
Ph.D., associate professor at the
University of Texas-Health Science Center School of
Nursing and adjunct professor at the M.D. Anderson
Cancer Center. “I get the sense that patients are not
adequately prepared” for the reality.
“There is still a lot of misinformation and misunderstanding about the impact of non-malignant brain
tumors, particularly when their effects can be life
threatening,” said Nancy Conn-Levin, a 15-year brain
tumor survivor, author and facilitator of a large brain
tumor support group for the past 10 years. “Especially
for those brain tumor survivors who appear ‘fine’ (not
visibly disabled), their challenges often go unnoticed,
sometimes even by close friends and family members.”
In fact, a recent study found that many
benign brain tumor patients do not
receive, yet greatly need, supportive care
services following a benign brain tumor
diagnosis and subsequent treatment. The
study, conducted at a Toronto hospital,
assessed 29 patients monitored over a
two-year period following a benign brain
Paula Sherwood,
tumor diagnosis.
R.N., Ph.D.
Many of the patients “would have benefited in the short-term peri-operatively
(before and after surgery) from support
services that are routinely available to
cancer patients but not to patients with
benign tumors,” said Janice Wong, a third
year medical student at Toronto Western
Hospital, and the co-author of the study,
“A qualitative assessment of the supTerri Armstrong, Ph.D.
portive care and resource needs of
patients undergoing craniotomy for
benign brain tumors,” appearing in the
October 2010 issue of the journal
Supportive Cancer Care.
“It was especially important for many
patients to know what to expect from the
surgery and beyond, and to communicate with others with similar diagnoses,”
said Wong.
Nancy Conn-Levin
The study recommends extending
existing and well-developed resources designed for
patients with malignant brain tumors to those with
benign brain tumors. In addition, a patient’s health
care team should strive to be aware of specific factors
that may modify patient support needs and make
appropriate recommendations for community support
resources.
N Continued on page 4
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N I may look OK but I’m not: continued from page 3
with all members of the health
“Many people with non-maligABTA
RESOURCES
care team.
nant brain tumors feel somehow
“Patients need to know that
less entitled to support and
The American Brain Tumor Association
they are not alone,” said
helpful resources (i.e., rehabilitaoffers publications and resources to
Armstrong. “There are available
tion services, vocational counhelp patients and families navigate the
resources, and it’s OK and
seling, transportation assistance,
brain tumor journey.
important to let your health care
etc.),” said Conn-Levin, who is
Visit www.abta.org for more information.
team know if you are having difspeaking at the ABTA PatientOr, contact ABTA at 1-800-886-ABTA
ficulties.”
Family Connections Meeting &
(2282) or [email protected].
Sharmyn McGraw, 49, a pituRetreat in July (see page 5). “Even
itary tumor survivor, said “a prothose survivors of non-malignant
fessional therapist, counselor or spiritual practitioner,”
brain tumors who are moderately to
are often very good resources for patients. “Finding a
severely disabled may find themselves
support team is important; however, the patient needs
having difficulty getting the support they
to be selective when choosing friends or family as part
need or even knowing where to ask for
of that team. Not everyone is in a position to undersupport. Following my own brain tumor
stand a patient’s needs and this can make it difficult for
surgery, I received no information at all
the patient, friend or family member that is trying to
about rehabilitation services, neuro-psybe supportive.”
chology testing, brain tumor support
Janice Wong
Corrin recommends counseling for family members
groups or any other type of assistance. I
and caregivers. “They can’t understand what’s in a
also was not told about the importance
person’s mind, but if they are given the support and
of lifelong follow-up care, to be certain
other tools, it can help.”
that any potential recurrence was diagShe also suggested returning (if possible) to the
nosed at an early stage.”
activities that you loved before the brain tumor. “I’m
Sherwood suggests that if problems are
an athlete and I returned to the gym five days a week as
suspected, persons with a benign tumor
soon as possible. It brought me comfort and helped
should receive an evaluation from a clinwith my hand-eye coordination.”
ical neuropsychologist, even if it means
Corrin does crossword puzzles and routinely plays
traveling to a major medical center to do
Sharmyn McGraw
board games to keep mentally fit. She joined a support
so. “A neuropsychologist can identify
group from a list obtained through ABTA, and read the
areas of deficit; things that the person has trouble
educational materials on benign brain tumors at
doing, like remembering day to day activities and figabta.org.
uring out problems.“ And while these deficits may con“I feel like I made a miraculous recovery,” said
tinue “there are a lot of compensatory strategies that
Corrin. “Every day that I can enjoy the sun and watch
can help minimize their effects.” She also recommends
my children grow is a miracle.” NN
that patients strictly adhere to follow-up visit schedules
Headlines
VOLUME 38, NUMBER 1
Our purpose: The American Brain Tumor
Association exists to eliminate brain tumors through
research and to meet the needs of brain tumor
patients and their families.
Claudette Yasell, president, ABTA Board of Directors
Elizabeth M. Wilson, executive director
Sheryl Cash, editor
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HEADLINES
SPRING ~ SUMMER 2011
Please feel free to share Headlines with others. However,
the contents are the property of the American Brain
Tumor Association. Written consent must be obtained
from ABTA before reproducing any part of this newsletter.
Copyright 2011 ABTA, ISSN 1949-0593
American Brain Tumor Association
8550 W. Bryn Mawr, Suite 550, Chicago, Ill. 60631 US
Toll Free Patients: 800.886.ABTA (2282)
Toll Free Events: 800.886.1281 [email protected]
www.abta.org
Headlines, the American Brain Tumor Association’s
newsletter, is not intended as a substitute for
professional medical advice and does not provide
advice on treatments or conditions for individual
patients. All health and treatment decisions must be
made in consultation with your physician(s), utilizing
your specific medical information. Inclusion in an ABTA
newsletter is not a recommendation of any website,
product, treatment, physician or hospital.
ABTA to Host 2011 Patient-Family Connections
Meeting & Retreat, July 29-30
nce again, the American Brain Tumor Association
is bringing together patients and families for a
weekend of sharing, caring, learning and inspiring.
The 2011 Patient-Family Connections Meeting &
Retreat will be held Friday and Saturday, July 29th and
30th, at the Marriott Lincolnshire Resort in Lincolnshire,
Ill. (just north of Chicago and O’Hare International
Airport). Attendees will hear the latest on brain tumor
research, treatment and quality of life issues, and have the
opportunity to ask questions of leading physicians and
researchers. The Marriott Lincolnshire also provides the
perfect setting to relax, restore and connect with others
sharing similar diagnoses and experiences.
O
Meeting & Retreat Highlights
FRIDAY AFTERNOON
• Opening remarks by ABTA volunteer Wendy Diez
who cared for her husband following a brain
tumor diagnosis
N Continued on page 6
Victoria Reggie Kennedy to Speak
at ABTA Annual Meeting Dinner
ictoria Reggie Kennedy will be the keynote
speaker at ABTA’s Annual Meeting Dinner,
“Strength through change and challenge,” at 7:30
p.m. on Friday, July 29,
at the Lincolnshire
Marriott. The widow of
the late U.S. Senator
Edward M. Kennedy
who passed away in 2009
following a brain tumor,
Mrs. Kennedy was
described by the New
York Times as the late
Victoria Reggie Kennedy
Senator’s “closest confidante in politics and
life.” Her talk will discuss her life with the Senator
and the brain tumor diagnosis that irrevocably
altered the direction of their lives. Go to
www.abtaannualmeeting.org for ticket information.
V
New This Year: Support Group Leader
and Volunteer Event Organizer Training
Support Group Leader Training
Support groups provide a safe forum for discussion and understanding for patients and families
coping with a brain tumor diagnosis. If you facilitate
a brain tumor specific support group, or are planning to start one, this workshop will give you critical
tools and facilitation techniques that will make you a
stronger leader. Continuing education credits are
available for nurses and social workers. Workshop
topics include:
• Advances in treatment for brain tumors and
their side effects
• Understanding neuropsychological issues
• Basic techniques for starting and sustaining a
support group designed for brain tumor
patients and their families
Volunteer Event Organizer Training Program
If you, a friend or a loved one is living with a brain
tumor diagnosis, you can feel powerless. Hosting an
event in your community to raise awareness and
funds for brain tumor research and care can provide
a meaningful way to help. This workshop, offered by
ABTA’s experienced event managers in collaboration
with fundraising consultant Event360, will show you
how to create a successful event, including step-bystep guidelines for how to:
• Make your fundraising idea a reality
• Promote your event through advertisement,
media and publications
• Raise the total donation amount by forming
participant teams
• Acquire sponsors for your event
• Create free online registration/donation sites
• Manage the logistics of your event
More information on both of these programs is
available at the Patient-Family Connections Meeting
& Retreat website: www.abtaconnectionsmeeting.org.
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New TrialConnect™ Service Links Brain Tumor Patients
with Appropriate Clinical Trials
he American Brain Tumor Association recently
launched TrialConnect™, a new service that links
brain tumor patients with appropriate clinical trials
based on tumor type and treatment history. The free
and confidential service, administered by
EmergingMed, is offered in English and Spanish.
“TrialConnect™ reflects the American Brain Tumor
Association’s commitment to providing patients and
their families with the most current information on
new and alternative treatments as well as assistance in
understanding and accessing them,” said ABTA
Executive Director Elizabeth Wilson.
Clinical trials test the safety and effectiveness of
treatments that have already shown significant promise
in laboratory studies. For patients, clinical trials provide access to therapies that would otherwise be
unavailable. All clinical trials are overseen by govern-
T
ment and local hospital boards, and subject to rigorous
regulation and oversight.
For more information, contact a TrialConnect™ specialist at 877-769-4833, Monday-Friday, from 8:30 a.m.
to 6:30 p.m. EST, or visit www.abtatrialconnect.org. NN
N Register Today! continued from page 5
• A health care/brain tumor policy and advocacy
update featuring Diane Dorman of the National
Organization for Rare Diseases (NORD)
• New brain tumor treatment highlights from
physicians at Columbia University Medical Center
and other prominent brain tumor centers
• Scientific highlights from ABTA-funded researchers
SATURDAY MORNING
• A continental breakfast
• A multi-disciplinary panel of physicians
discussing actual brain tumor cases
(mock tumor board)
• A networking lunch – chat and connect with new
and old friends!
SATURDAY AFTERNOON
• Tumor-specific workshops focusing on the treatment of brain tumors
• Care and support sessions – from Adolescent and
Young Adult Concerns, to OncoFertility,
Neuropsychology, Advance Care Planning and more
• Support groups – one for individuals living with a
6
HEADLINES
SPRING ~ SUMMER 2011
brain tumor diagnosis, the other for caregivers
• Learn, relax and restore. visit with our sponsors,
attend an art therapy workshop, or visit in the
Relaxation Café
• Closing Reception. Join us in the Picnic Grove for
refreshments and the inspirational sounds of a
Native American Flute Circle
FOR MORE INFORMATION OR TO REGISTER
Please visit the Patient-Family Connections Meeting
& Retreat website at www.abtaconnectionsmeeting.org,
or request a registration form by calling 1-800-886ABTA (2282) or sending a request to [email protected].
TO SECURE A HOTEL ROOM
Please call the Marriott directly at 847-634-0100. To
ensure that you receive the special $106 per night rate
(for up to four people in the room), please tell the operator that you are attending the American Brain Tumor
Association meeting. A direct online registration link, as
well as a link to the Lincolnshire Marriott website, are
available at www.abtaconnectionsmeeting.org (please
click on the “Travel” link at the top of the page). NN
Meet ABTA’s Discovery Grant Reviewers
n 2009, the American Brain Tumor Association
launched the Discovery Grant research program, an
innovative effort to elicit fresh and creative ideas for
solving the challenges of brain tumor diagnosis and
treatment. The program sets a high bar as it seeks concepts capable of changing paradigms.
These $50,000, one-year seed grants provide the initial
funds to take a concept from idea to early data that shows
the concept is reasonable. Through this new grant mechanism, ABTA seeks to stimulate and invigorate brain
tumor research, particularly in sciences outside the field
of traditional tumor biology, while encouraging the
careers of new and early career scientists.
At the center of these Discovery Grants is a review
panel of esteemed scientists who volunteer their time
to the program. Each was invited to the panel based
on their expertise, creative and visionary thinking,
and knowledge of the field. Many different disciplines are represented, allowing a wide scope of pos-
I
sibility across diagnostics and therapeutics.
The ABTA Discovery Grant process begins with a
letter of intent in which researchers succinctly describe
their new concept and its potential impact. Concepts
are reviewed for novelty and relevance; investigators
whose concepts are of interest are invited to submit a
full proposal. These detailed proposals are then
reviewed for novelty, potential to change paradigms,
study design, and the abilities of the researcher.
“The American Brain Tumor Association’s Discovery
Grant reviewers are integral to determining if a new
concept truly has potential to change the field,” said
ABTA Research Director, Deneen Hesser. “These scientists are making invaluable contributions to the
Discovery Grant program, and ultimately, to our
patients, by facilitating the introduction of new
approaches to brain tumor treatment. We’re looking for
scientists who think differently, who care deeply, and
who are willing to put those thoughts into action.”
The ABTA’s Discovery Grant Program was highlighted, along with the Bill and Melinda Gates
Foundation and the U.S. Department of Defense, as a viable “high-risk” research funder in the
February issue of The Scientist magazine.
The 2011 ABTA Discovery Grant reviewers:
Nathalie Y.R. Agar, Ph.D.
(2005 ABTA Fellow and 2008 Small Project awardee)
Dr. Agar is the director of the Surgical
Molecular Imaging Laboratory in the
Department of Neurosurgery at Brigham
and Women’s Hospital in Boston, Mass.
Dr. Agar is at the forefront of the rapidly
growing subfield of chemical imaging
technology, which entails the direct mapping and
imaging of bio-molecules present in brain tumor
tissue. The Agar Laboratory develops and validates
mass spectrometry imaging methodologies to be
applied to neuro-oncology to potentially guide and
improve the care of brain tumor patients. Some of
these methodologies could eventually provide realtime diagnostic information.
Kenneth D. Aldape, M.D.
Dr. Aldape is a professor in the
Department of Pathology at the
University of Texas M. D. Anderson
Cancer Center. Dr. Aldape’s laboratory
focuses on clinically relevant molecular
genetic alterations in brain tumors.
Specifically, he and his researchers use screening techniques (e.g., expression microarray, comparative
genomic hybridization) to identify changes that influence clinical-biologic behavior. Dr. Aldape’s lab is
working to utilize these aberrations to subclassify
tumors in the hope of optimizing and individualizing
therapies for brain tumor patients.
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N A Catalyst in Discovery: continued from page 1
• People who have had ionizing radiation to the head are more likely to
develop brain tumors
• Individuals with rare syndromes such
as neurofibromatosis (type 1 and 2),
Li-Fraumeni and Turcot’s syndrome
have an increased risk for glioma
• Gliomas run in some families
Approximately 5 to 10 percent of
gliomas may be related to inherited
gene mutations
• First degree relatives (siblings, parents
and children) of glioma patients have
an increased risk of glioma – approximately 2 times greater than that of
someone without a family history
Gliogene is seeking renewed NCI
funding to continue research on genetic
risk factors in families. In addition, the
Gliogene Consortium of 15 medical centers has received an NCI grant for an
international case control study on
gliomas which will involve recruiting
6,000 individuals with newly diagnosed
brain tumors, and 6,000 individuals
without brain tumors.
As always, patients and family members
with additional questions about family
history and brain tumors should talk to
their doctor. In addition, a family history
of brain tumors should be shared with a
patient’s physician. The more information
a physician has about a patient’s family
health history, the better equipped he or
she is to provide optimal and personalized
health care.
Brain tumor incidence
Metastatic Brain Tumors – While the
number of metastatic brain tumors diagnosed in the U.S. each year has estimated
at between 150,000 and more than
500,000, preliminary research funded by
ABTA has found that the number may
actually be closer to 55,000. A metastatic
brain tumor originates as cancer in one
part of the body, and later moves or
metastasizes to the brain. A definitive inci8
HEADLINES
SPRING ~ SUMMER 2011
Meet the
ABTA-Supported
Researchers
Melissa Bondy, Ph.D.
Gliogene
Markus Bredel, M.D., Ph.D.
NJK IA
Faith Davis, Ph.D.
Metastatic brain tumor
incidence rates
Donald “Will” Parsons, M.D., Ph.D.
IDH1
Johan Skog, Ph.D.
Exosomes
dence rate for metastatic brain tumors is
critical for early diagnosis and effective
treatment. The Central Brain Tumor
Registry of the United States (CBTRUS),
which conducted the preliminary study,
has received additional ABTA funding to
continue the research to provide a more
accurate pattern of metastatic tumors and
establish a baseline for data on the epidemiology of brain metastasis.
Targets for personalized therapy
IDH1 – The discovery of a genetic
mutation associated with brain tumors,
called IDH1, has given researchers a
reason to be optimistic about the future
of genomic analysis and the impact it will
have on brain tumor classification, prognoses, targeted therapy and personalized
therapy. It is now recognized as the most
ABTA-supported research on DNA sequencing
and IDH1-IDH2 mutations in gliomas were
named among the “most relevant recent
discoveries in cancer research” in the March
2011 issue of Nature Medicine.
common, and earliest known, genetic
mutation in brain tumors. This mutation
will have applicability as a biomarker,
may be used to differentiate between primary and secondary tumors, and to track
tumor progression. The mutation is most
often observed in glioblastoma, and may
soon become a springboard for new
approaches to diagnosis, treatment and
prediction of outcomes.
Exosomes – Exosomes are tiny “sacs”
shed by tumors of all types; these sacs are
capable of communicating with each
other, and circulate freely throughout
bodily fluids such as blood, urine, cerebrospinal fluid, and saliva. Known within
the research community for almost forty
years, until recently scientists believed
exosomes held little value to the brain
tumor community. Scientists have
N Continued on page 9
N Discovery Research Grant Reviewers: continued from page 7
Michael W. Graner, Ph.D.
Dr. Graner is an associate professor in the
Department of Neurosurgery at the
University of Colorado Denver. Dr.
Graner’s research focuses on the
immunology and biology of brain
tumors. From a clinical perspective, he is interested in
vaccine design and implementation, which includes the
search for appropriate treatment combinations to
enhance immune response or to downplay the role of
tumor-induced immune suppression.
Daphne Haas-Kogan, M.D. (1999 ABTA Fellow)
Dr. Haas-Kogan is a principal investigator,
associate professor, and vice-chair for
research in the Department of Radiology
at the University of California, San
Francisco (UCSF). Dr. Haas-Kogan also
heads the Haas-Kogan Laboratory at
UCSF’s Helen Diller Family Comprehensive Cancer
Center. Dr. Haas-Kogan’s research focuses on developing targeted therapies for brain and pediatric malignancies. Her laboratory is primarily interested in histone
deactylase (HDAC) inhibitors and phosphoinositide-3
(PI3)-kinase inhibitors, and has identified and characterized several agents that can enhance the radiation
response of glioma and neuroblastoma tumors.
Eric C. Holland, M.D., Ph.D.
Dr. Holland is the Emily Tow Jackson
Chair in oncology and director of the
Brain Tumor Center at MSKCC. He is a
member of the Cancer Biology and
Genetics program at the Sloan-Kettering
Institute, and attending surgeon in the Departments of
Neurosurgery and Surgery at Memorial Hospital. Dr.
Holland’s research team is seeking to understand the
molecular mechanisms underlying the development of
central nervous system tumors and developing models
of these cancers in mice.
Tom Mikkelsen, M.D.
Dr. Mikkelsen in the co-director of the
Hermelin Brain Tumor Center at Henry
Ford Hospital in Detroit, Mich., a basic
science and clinical research resource for
patients in Michigan and surrounding
states. Since 1992, Dr. Mikkelsen has led
the brain tumor program at Henry Ford Hospital, and
is responsible for building the clinical trials program
and brain tumor biology laboratory.
Donald ‘Will’ Parsons, M.D., Ph.D.
(2007ABTA Fellow)
Dr. Parsons is an assistant professor in
the Departments of Pediatrics and
Molecular and Human Genetics at the
Baylor College of Medicine. The focus of
Dr. Parsons’ research has been the development of large-scale (genomic)
methods to identify and evaluate cancer-causing mutations in human tumors, with a goal of rapidly identifying genetic alterations which may serve as targets for
new diagnostic tests and treatments. His work has
resulted in the identification of numerous mutated
genes and genetic pathways that contribute to tumor
initiation and progression, providing a novel view of
the genetic landscape of human cancers.
N A Catalyst in Discovery: continued from page 8
learned that these micro-miniscule vesicles (30-100 nm
in diameter) contain genetic brain tumor material that
can be measured, and may hold information about the
tumor type as well as changes in the tumor. This very
early research may prove to be the critical building
blocks for progress in brain tumor biomarker studies
and innovative, personalized drug therapies.
NJK IA – One in four glioblastoma patients have an
abnormal genetic finding that may contribute to tumor
development, promote resistance to therapy, and con-
siderably worsen a patient’s outcome. The absence or
abnormality of a gene called NFK IA triggers a biochemical pathway similar to that known in epidermal
growth factor receptor, or EGFR, another genetic
mutation commonly found in glioblastoma. That both
defects produce the same outcome, and the potential
for interaction between them, may help explain why
efforts to treat the disease by targeting only EGFR have
been disappointing. NN
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9
ABTA’s 2009 Medical Student of the Year
Secures Prestigious NIH Fellowship
lexander Ksendzovsky, the
American Brain Tumor
Association’s 2009 Outstanding
Medical Student Summer Fellow,
has secured a prestigious
National Institutes of Health
Clinical Research Training
Program (CRTP) fellowship in
Alexander Ksendzovsky
Bethesda, Md.
Ksendzovsky is training under the direction of Dr.
Russell Lonser, chief of the Surgical Neurology Branch
at the National Institute of Neurological Disorders and
Stroke (NINDS). Specifically, he is studying novel
glioma cancer stem cell markers, characterizing the
pathogenesis of von-Hippel Lindau disease and neurofibromatosis type 2, and establishing novel small
molecule inhibitors which halt tumor progression.
As an ABTA Medical Student Summer Fellow
(MSSF) in 2009, Ksendzovsky worked with Dr. Roberta
P. Glick at Mount Sinai Medical Center in Chicago
studying the effects of cytokins – small proteins
released by cells that can trigger the body’s immune
system – in the treatment of malignant gliomas.
At the end of the summer, Ksendzovsky, as well as the
other MSSF recipients, were required to submit a report
on their laboratory experience. Based on these reports,
ABTA’s distinguished Scientific Advisory Council
A
choose a researcher to receive the Lucien Rubenstein
Award, named in memory of Dr. Lucien J. Rubenstein, a
past professor of neuropathy at the University of
Virginia and a world-renowned brain tumor researcher.
As part of the award, the outstanding student receives
$1,000 in addition to the fellowship stipend.
“The ABTA fellowship has played a huge role in my
current and future development as a physician-scientist,” said Ksendzovsky. “Through ABTA, and with
Dr. Glick, I learned the fundamental aspects of
research. This experience not only prepared me for my
research year at the NIH, but most importantly
sparked my interest in research and further confirmed
my pursuit of a career in academic neurosurgery.”
When Ksendzovsky’s NIH fellowship ends in July, he
will return to the Chicago to complete his 4th year at
the Chicago Medical School of Rosalind Franklin
University in North Chicago, and to Dr. Glick’s laboratory to continue his brain tumor research.
The 2010 MSSF Outstanding Medical Student is
Ryan Salinas, a 2nd-year medical student at the
University of California, San Francisco (UCSF).
Salinas’ research focused on the role of histone
demathylase JMJD3 as a potential treatment target for
glioblastoma. He worked under the direction of Daniel
A. Lim, M.D., Ph.D., assistant professor in the
Department of Neurological Surgery at UCSF. NN
The American Brain Tumor Association research program is proud to have impacted the
early careers of more than 400 (and counting) brain tumor researchers.
ABTA Awards Clinical Research Grant to Tocagen Inc.
to Advance Canine Treatment Model
he ABTA has awarded funding to San Diego-based
Tocagen Inc. for the evaluation of its investigational treatment Toca 511 & Toca FC in companion
dogs with brain cancer.
The $200,000 ABTA Clinical Research Grant to
Tocagen, a privately held biopharmaceutical company
focused on advanced cancer treatments, represents the
T
10
HEADLINES
SPRING ~ SUMMER 2011
first time that ABTA has directly funded industry research.
“This research presents a tremendous opportunity to
advance treatment for glioblastoma, the most aggressive
of brain tumors,” said ABTA Executive Director
Elizabeth Wilson. “Tocagen’s investigational therapy
holds the potential for brain tumor research breakthroughs. We are pleased that our N Continued on page 11
ABTA in Action
ABTA Executive Director Elizabeth Wilson presents Frank Furnari,
Ph.D. with the ABTA Excellence in Research Award at the Society for
Neuro-Oncology (SNO) 15th Annual Scientific Meeting, Nov. 18 to
21, 2010, in Montreal Canada
he American Brain Tumor Association (ABTA)
received the 2011 Oncology Nursing Society
Foundation Ellyn Bushkin Friend the Foundation
Award at the annual ONS Congress, April 28-May 1, in
Boston. The award “recognizes individuals, group or
corporations who have provided continuous support
of the mission of the ONS Foundation.” In collaboration with the ONS, ABTA supports neuro-oncology
nursing research focused on understanding and
enhancing quality of life for brain tumor patients and
their families.
ABTA Director of Research Deneen Hesser, MSHSA,
RN, OCN, is among the co-authors of the National
Comprehensive Cancer Network’s Clinical Practice
Guidelines for Central Nervous System Cancers,
appearing in the organization’s April journal. Hesser is
a member of the NCCN Guidelines Central Nervous
System Panel.
Social worker Jillann Demes, MSW, LCSW, OSW-C,
represented ABTA at two spring conferences: the
Association of Oncology Social Workers’ (AOSW)
27th Annual Conference in St. Louis, Mo., and the
American Association of Neuroscience Nurses’
(AANN) meeting in Kansas City, Mo.
ABTA Executive Director Elizabeth Wilson and
Hesser participated in a meeting of the Brain Tumor
T
Funders Collaborative, February 27 -March 2, 2011, to
evaluate the outcomes of 11 biomarker studies, funded
by BTFC during the previous year.
On Jan. 21, Wilson joined representatives from patient
advocacy organizations for a one-on-one dialogue with
Food and Drug Administration (FDA) Commissioner
Margaret Hamburg. The meeting was hosted by the
National Organization for Rare Diseases (NORD) in
Washington D.C., of which ABTA is a member.
Also in January, Wilson met with other patient advocate members of Regulatory Education and Action for
Patients (REAP) in Washington D.C., and received
updates from FDA and U.S. Centers for Medicare &
Medicaid Services (CMS) representatives on health
care and other policy changes.
In November, Wilson and Hesser attended the 2010
Society for Neuro-Oncology meeting (SNO) in
Montreal, Canada. Wilson presented the ABTA
Excellence in Research Award to Frank Furnari, Ph.D.,
University of California, San Diego; and joined EMD
Serono in presenting the first International Outreach
Fellowship Award to Yi Lin, M.D. The ABTA also a
sponsored the Institute for Medical Education &
Research, Inc.’s SNO satellite dinner symposium:
“Challenges, Controversies, and Opportunities in
Glioblastoma Multiforme: A Targeted Perspective.” NN
N ABTA Awards Clinical Research Grant to Tocagen Inc.: continued from page 10
funding will support research that may help narrow the
gap between mouse data and viable human treatments.”
According to the National Cancer Institute (NCI),
canine cancers share many features with human cancers, including tumor genetics, molecular targets, biological behavior, and response to conventional therapy.
Researchers are increasingly recognizing that evaluation of promising new therapies in canine cancer
patients can provide valuable data on treatment safety
and effectiveness in humans.
“We have designed our product candidate, Toca 511
& Toca FC, to deliver an anti-cancer drug to cancer
cells while leaving healthy cells unharmed,” said Harry
Gruber, MD, the CEO of Tocagen. “We appreciate the
opportunity to work with the ABTA and believe this
grant will support important development activities
that may take us a step closer towards making a positive difference in the lives of people with brain cancer.”
In 2011, an estimated 64,000 individuals will receive
a primary brain tumor diagnosis, and approximately
one-quarter of all adult cancer patients will have a
cancer that will metastasize to the brain. NN
A M E R I C A N B R A I N T U M O R A S S O C I AT I O N
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11
Having Fun Raising Funds
Recent Events
ach year events are held throughout the country to support the
research and patient-family education and support programs of
the ABTA.
E
Run Your Pace
Choose Your Place
13th Annual Justin Porter “Train for the Brain” Walk
Sept. 4, 2010 • Coeburn, Va.
Join the International
ABTA Running Team!
Greens for Gardner Oct. 23, 2010 • Austin, Texas
JAG Gala March 26, 2011 • Philadelphia, Pa.
Interested in hosting or supporting an ABTA event?
Visit www.abta.org or contact us at 1-800-886-1281.
12
HEADLINES
SPRING ~ SUMMER 2011
Do you plan on participating in a
running event this year? If so,
make your race more meaningful
by joining the ABTA Running Team
and raising funds for brain tumor
research and desperately needed
patient-family information and
support. As of May 13, 67 runners
had joined the ABTA Running
Team with plans to participate in
events in California, Colorado,
Missouri, New Jersey and beyond.
Race participation is not limited to
the U.S. And while registration is
closed, ABTA has a limited number
of available Bank of America
Chicago Marathon entries. Learn
more about the ABTA Running
Team at www.abtarunners.org
The 2011 Spring Appeal: Our Family Helping Your Family
hris Diez had a beautiful, growing family.
His wife, Wendy, was nine months pregnant
with their second child when he was diagnosed
with a glioblastoma brain tumor. The day they welcomed baby Claire into the world, Chris, Wendy,
and their 17-month-old son, Ian, joyously celebrated. Ten days later, just 22 days after his diagnosis, Chris lost the battle with his brain tumor.
C
Every day, more than 500 people like Chris are
newly diagnosed with a brain tumor.
More than 600,000 Americans are currently
living with this devastating illness. Millions
more—family members like Wendy and her children—find their worlds turned upside down
overnight as they face the reality of this dreaded
diagnosis.
The ABTA is a community dedicated to scientific
discovery, clinical innovation, information,
empathy and support. Our family helps patients
and their families
during the hardest times
they’ll ever face. And we
need your help.
Claire, Wendy and Ian Diez
Consider contributing to the 2011 Spring Appeal
Your gift of any size will help support our commitment to fund
pioneering research efforts and helping families to better
understand and cope with this disease.
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13
The Passion and Commitment Behind
the 2011 Path to Progress:
Meet Nicholas Sieger of Team Double Whammy:
Race for Karen and Bob
icholas Sieger is running on
May 14, 2011 at the Path to
Progress to honor his parents: his
mother, Karen, who was diagnosed
nine months ago with a glioblastoma brain tumor, and his father,
Robert, who passed away in 2009
from a glioblastoma.
“We’re still dumbfounded,” said
Sieger, 35, of Chicago, captain of the
21-member team Double Whammy:
Race for Karen and Bob. “This is
supposed to be a rare disease, and to
N
Bryan, Karen and Nicholas Sieger
have two occurrences so close
together with people with different
DNA. How could this happen?”
Karen and Robert (Bob) “were
truly happy,” said Sieger of his parents who were married 35 years
before their world came crashing
down in the fall of 2008. It was
then that Bob was diagnosed with
throat cancer. While the treatment
was difficult, Bob seemed to be
doing well. Following a seizure at
work, however, doctors discovered
that Bob had a glioblastoma brain
tumor. With Karen by his side, he
fought valiantly until he passed
away in June 2009.
Later in August 2010, during a
family vacation to scatter Bob’s
ashes, Karen began to suffer severe
headaches and balance problems.
While family members initially
thought that Karen may have had a
mini-stroke, an MRI showed the
unthinkable — a glioblastoma stage
IV brain tumor. She was immediately sent to surgery to remove the
mass and is currently undergoing
chemotherapy treatment to prevent any further tumor growth.
Karen has lost much of her vision
due to the tumor’s location.
“This year I am running in the
Path to Progress for both of my parents: my late father and my mom
who will be a 9-month GBM survivor on the day of the event in
May,” said Sieger. Karen, who lives
in Jacksonville, Fla. near Nicholas’
brother, Bryan, planned to make the
trip to Chicago on May 14th to support both of her sons at the event.
“We hope that many family and
friends will come to Chicago to
take part in the Path to Progress to
show support for Karen and to
fundraise for the ABTA,” said
Sieger. “As I live far across the
country from my mom, the Path to
Progress is a small way I can show
my support for her when I can’t be
there by her side.”
Sieger said he also hopes to raise
money for brain tumor research.
*Path to Progress had not occurred at time of Headlines printing
14
HEADLINES
SPRING ~ SUMMER 2011
The 6th Annual American
Brain Tumor Association
Path to Progress*
Saturday, May 14, 2011
at Soldier Field
Nearly 6,000 runners and
walkers were expected to
converge at Soldier Field on
Chicago’s lakefront for ABTA’s
annual 5K Run/Walk on May
14, 2011. At press time, 300
teams were registered for the
event including brain tumor
survivors, and family members
and friends — ages 1 to 85,
from 35 states — who have
been impacted by a brain
tumor diagnosis.
Learn more at
www.pathtoprogress.org
“No one is sure of the cause of the
tumors that have afflicted my parents. Progress has been made in just
the time span between my father’s
diagnosis and my mother’s, yet more
needs to be done to find a cure.”
Meet Graham of the Team,
Graham’s Fat Heads
raham is participating in his third Path to Progress
this year, with his wife Bonnie, and two kids.
Graham is a 9-year brain tumor survivor.
Graham and his family became involved with the
Path to Progress in 2009, shortly after they moved from
Los Angeles to Chicago and discovered “…this wonderful event nearby. Bonnie and I both run, and this
was a logical event for us to do given that I had a primary brain tumor diagnosis.” This year, Graham’s Fat
Heads team will include Bonnie and Graham, their
children, extended family and friends.
Graham was diagnosed with a primary brain tumor,
at the age of 31, after suffering from headaches that
would wake him up in the morning, resolve during the
day, and then return in the evening when he would lie
down and sleep. A long-time headache sufferer, he
G
“The Path to Progress raises money
that helps move medical science
towards what patients and their
families all hope for, a cure.”
Graham of Graham’s Fat Heads
didn’t think much of this unusual pattern until it got to
the point that there wasn’t much of the day he was
without a headache. The headaches turned out to be
caused by increased intracranial pressure due to the
large tumor mass.
“The diagnosis was a real emotional shock to both
me and my family. The support I have received from
family and friends has been invaluable,” said Graham.
Doctors removed the tumor and initially diagnosed it
as form of meningioma, a relatively common brain
tumor. However, doctors later revised the diagnosis to
Graham and his family, Bonnie, Rowan and Ellery.
a hemangiopericytoma, an uncommon type of solitary
fibrous tumor.
The tumor has returned twice since the initial surgery, most recently in January of this year. “The
recovery from this occurrence has been good,” said
Graham, who also underwent Gamma Knife radiosurgery in February. “We have two small kids now, so
this latest occurrence has involved a lot of discussions
about why daddy was in the hospital and had all the
staples in his head, etc. It has been tough to see them
process the whole situation.”
“To us, events like the ABTA Path to Progress are
important because they bring together people with
similar experiences and create this wonderful feeling of
camaraderie,” said Graham. “Also, the Path to Progress
raises money that helps move medical science towards
what patients and their families all hope for, a cure.”
“Brain tumors are a devastating diagnosis as the
brain controls life functions, emotions, personality,
intelligence – everything. Our hope is that brain tumor
patients can ultimately live long and meaningful lives
with their families.”
A M E R I C A N B R A I N T U M O R A S S O C I AT I O N
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15
8550 W. Bryn Mawr Ave., Suite 550
Chicago, Illinois 60631
Highlights from this issue
• The Unmet Needs of Benign Brain
Tumor Patients . . . . . . . . . . . . . . . . . . . . . page 1
• The 2011 Patient-Family Connections
Meeting & Retreat . . . . . . . . . . . . . . . . . . page 5
• ABTA Supported Science is Already
Changing the Future of Brain Tumors . . . . page 1
• Having Fun Raising Funds . . . . . . . . . . . . page 12
SAVE THE DATE!
WE’RE MOVING!
Beginning in June 2011, the
American Brain Tumor Association
will have a new address:
REGISTER TODAY FOR THE PATIENTFAMILY CONNECTIONS MEETING & RETREAT
8550 W. Bryn Mawr Ave.
Suite 550
Chicago, Ill. 60631
You can still reach us at 1-800-886-ABTA
(2282), [email protected] or www.abta.org.
www.abta.org