BASIC FACTS ABOUT
GLIOMA
“Where hope
springs eternal”
Pediatric Brain Tumor Foundation
A Resource for Families
ACKNOWLEDGEMENTS
The Pediatric Brain Tumor Foundation wishes to thank
Ian Pollack, MD, Department of Neurosurgery, Children’s
Hospital of Pittsburgh, Pittsburgh, PA, for the scientific
review of this publication.
SOURCES
Statistical data in this publication was obtained from
the Central Brain Tumor Registry of the United States
(CBTRUS) and the World Health Organization
Classification of Tumors, 2000.
DISCLAIMER
The Pediatric Brain Tumor Foundation does not
engage in rendering medical advice or professional
medical services. Information contained in this
publication is NOT intended to be a substitute for
medical care and should not be used for the diagnosing
or the treatment of a brain tumor or any other health
problem. If you have or even suspect you have a
problem concerning your health or that of someone
else, you should consult with your healthcare provider.
The materials provided by the Pediatric Brain Tumor
Foundation are compiled based on current information
at the time that they were written. Medical research
concerning disease and treatments is an ongoing
process. We endeavor to keep our materials current.
However, you should review with your doctors and
medical institutions to attempt to seek the most current
information available.
COPYRIGHT
Copyright© 2003 by the Pediatric Brain Tumor
Foundation.
The contents of this publication have been prepared
for the exclusive use of the Pediatric Brain Tumor
Foundation. It may not be reproduced in part or in its
entirety without the written permission of the Pediatric
Brain Tumor Foundation.
Mission Statement
Find the cause and cure of childhood
brain tumors through the support of
medical research;
Increase public awareness about the
severity and prevalence of childhood
brain tumors;
Aid in early detection and treatment
of childhood brain tumors;
Support a national database on all
primary brain tumors; and
Provide hope and emotional support
for the thousands of children and
families affected by this life-threatening
disease.
Pediatric Brain Tumor Foundation
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Pediatric Brain Tumor Foundation
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INTRODUCTION
The news that a child has a brain tumor is nearly
impossible to absorb. Naturally, when parents first
receive such news, they are stunned. Gradually, the
initial shock is replaced by a desire to learn more about
the tumor. Exactly where is it? Which areas of the body
is it affecting? What can be done about it? What lies
ahead? Almost instinctively, people realize that seeking
the answers to these questions will restore a sense of
control.
To help you in your efforts to gain understanding
about your child’s illness, the Pediatric Brain Tumor
Foundation (PBTF) has put together this booklet. It
contains information about the specific type of tumor
that has invaded your family’s world. We encourage you
to learn as much as you can. Trust your instincts. When
you have questions or concerns, voice them. Take an
active part in selecting which approach will result in the
best care for your child.
Pediatric brain tumors require specialized treatment
methods that are most often provided at comprehensive
pediatric hematology/oncology centers by a
multidisciplinary team of pediatric cancer specialists. This
team usually includes physicians, nurses, social workers,
child life specialists, psychologists and rehabilitation
specialists. Such care should provide families with
access to education and support services.
We have much to learn about childhood brain
tumors. Funding research to find the cause and cure,
increasing public awareness, and aiding in the early
detection and treatment of childhood brain tumors are
all the ways the PBTF fulfills its mission. Families like
yours are at the heart of our mission. If you need further
information or other PBTF publications, our National
Family Support Program Coordinator is on staff to take
your call.
Contact us at (800) 253-6530 or e-mail:
[email protected].
A FEW BASIC FACTS
ABOUT BRAIN TUMORS
What causes a brain tumor?
The short answer is: We don’t know. Researchers
believe that inherited and genetic factors may be
involved. Environment may play a part. While studies
have yielded valuable information, they have not
provided a concrete answer about the cause of most
brain tumors. The key may even lie in areas not yet
investigated by science.
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What does it mean when a tumor is classified
as Grade I, Grade II, Grade III, or Grade IV?
Tumors are graded to help determine the best
treatment approach. The more aggressive and
dangerous a tumor is, the higher the grade it is
assigned. Some types of tumors, such as
medulloblastoma, are always considered high grade.
Grade I tumors are the most benign appearing under
the microscope. Grade II is a significant step higher with
cells that more easily become malignant. Malignant
tumors invade and destroy healthy tissue. Grade III and
IV tumors are malignant with increasing severity. Grade
alone does not determine prognosis, however. Other
factors, such as tumor location, can influence how easy
or difficult a tumor is to treat.
What is staging?
The “stage” of a cancerous tumor is based on its size
and the extent to which it has metastasized, or spread,
beyond the site of its origin.
GLIOMA
What is a glioma?
A glioma is a tumor of the glial cells, or neuroglia.
“Glia” literally means “glue,” and glial cells are also called
“nerve glue.” Different types of glial cells have different
functions: some connect and support the neurons, while
others respond to infection or damage in the nervous
system. Glial cells are involved in a high percentage of
brain and spinal cord tumors.
Historically the term glioma has been used as a
broad, generic name for a large group of tumors that
have many characteristics in common, yet contain
different cell types and behave in different ways.
For example, one type of glioma, the astrocytoma,
arises from small, star-shaped cells called astrocytes.
Another type, the oligodendroglioma, is composed of
cells called oligodendroglia which are very different from
astrocytes in appearance and function. Ependymomas
arise from cells that line the central canal of the spinal
cord and the ventricles of the brain (hollow areas in the
brain that contain cerebrospinal fluid). Gliomas
composed of more than one type of cell are called
mixed gliomas.
Because glial tissue is found throughout the brain
and spinal cord, gliomas can occur anywhere in the
central nervous system, or CNS. The name given to a
glioma is often based on its location. For example, a
glioma found along the optic nerves (the nerves in and
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around the eyes) is called an optic nerve glioma. A brain
stem glioma is located in the lowest, stem like portion
of the brain, the area which contains the midbrain, pons,
and medulla oblongata.
Gliomas can be low-grade (grade I or II), or highgrade (grade III or IV). Low-grade gliomas are welldifferentiated, and usually, slow-growing. High-grade
gliomas are fast growing, invasive, and malignant. Some
low-grade gliomas are capable of progressing to more
malignant forms.
Examples of grade III malignant, or anaplastic,
gliomas include anaplastic astrocytoma, anaplastic
oligodendroglioma, anaplastic ependymoma, and
anaplastic mixed glioma. Glioblastoma multiforme, a
grade IV glioma, is generally even more aggressive than
grade III gliomas.
cerebrum
posterior fossa
brainstem
midbrain
pons
medulla oblongata
fourth ventricle
cerebellum
tentorium
What are the symptoms of a glioma?
Symptoms depend on the exact location of the
tumor. For example, the cerebellum aids in coordinating
voluntary movements and maintains balance and
muscular tone. These are the functions that would be
affected by a tumor in that area. A glioma in the
cerebrum is likely to cause headaches, nausea, vomiting,
weakness of arms or legs, visual disorders, seizures, or
intellectual and behavioral problems.
Other symptoms of a glioma may include paralysis of
a single part of the body or one side of the body,
tremors, hormonal abnormalities, or diabetes insipidus.
The tumor may cause hydrocephalus or “water on the
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brain,” creating pressure that can cause headaches,
nausea, vomiting, or visual disturbances. In babies and
very young children whose skull bones are not firmly
set, hydrocephalus can actually cause the skull to
increase in size.
How common are gliomas in children?
The most common type of glioma in children is the
astrocytoma. Astrocytomas represent about one-third of
all brain tumors in people under age 19. Pilocytic
astrocytomas represent a little more than 15 percent of
all pediatric brain tumors. Pilocytic astrocytomas are
more common in children than in adults, occurring most
often between the ages of five and nine.
Ependymomas represent just over 6 percent of
childhood brain and CNS tumors. Incidence rates for
ependymoma are similar in children and adults.
Anaplastic astrocytomas, glioblastomas, and
oligodendrogliomas are considerably less common in
children than in adults.
Gliomas occur at nearly the same rate in male and
female children. (CBTRUS 1992-1997)
(See back cover for listing of additional tumor type
booklets)
DIAGNOSIS
Diagnosis is the process of finding out which disease
is causing a person’s symptoms. Only after this is done
can the best treatment plan be determined. In many
cases, making the diagnosis of a brain tumor can be
challenging because the early symptoms can mimic
those of other less serious conditions. However, once a
diagnosis of a brain tumor is considered, an imaging
evaluation of the brain is required to confirm the
suspicion. Following examination and evaluation of signs
and symptoms, MRI and CT scans are useful in
determining the presence of a brain or spinal cord
tumor, but biopsy is the only reliable way to confirm a
specific diagnosis.
MRI (Magnetic Resonance Imaging)
An MRI scan combines high-frequency radio waves
and a strong magnetic field to produce a picture of the
inside of the body. No x-ray radiation is involved. Before
the test begins, the doctor may inject a special dye
called contrast material into the patient’s vein. The dye
makes it easier to see abnormal tissue. The MRI
procedure usually takes from thirty minutes to an hour.
To have an MRI, the patient lies on a mechanical table.
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The table is then moved into a large structure with a
doughnut-shaped opening. If a “closed MRI” is used, it’s
a little like going into a tunnel. In contrast, an “open
MRI” is open on the top and sides.
Children are never left alone during an MRI. The child
is continually monitored during the procedure. Some
MRI centers will allow parents to remain with their
children as well. Although the scan should not cause
any pain, the thumping noise that occurs in the
machinery from time to time during the procedure may
startle young children. An accurate scan can only be
obtained if the patient is still. For this reason, a mild
sedative may be used to calm a child during the scan.
At times they may play music during the scan to help
with relaxation.
MRI Suite
CT (Computerized Tomography)
A CT scan uses a sophisticated x-ray machine
combined with a computer to create a picture of the
inside of the body. Before the test begins, the doctor
may inject a special dye called contrast material into the
patient’s vein. The dye makes it easier to see abnormal
tissue. When it is time for the scan, a technologist
positions the patient on a movable padded table. The
table inches slowly through a doughnut-shaped scanner
ring, stopping about every half-inch for a picture to be
taken. During the scan, the technologist watches through
a glass window and talks to the patient on an intercom.
The sound of motors and gears can be heard as the
scanner takes the pictures. A CT scan normally takes
less than an hour.
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PET (Positron Emission Tomography)
A PET scan provides a picture of brain activity. It may
be used when trying to tell whether a CT or MRI scan is
showing the return of a tumor or tissue damage caused
by radiation. PET may be used in addition to CT or MRI.
SPECT
(Single Photon Emission Tomography)
SPECT provides information similar to the PET scan,
but is more widely available.
Biopsy
A biopsy is a procedure in which a sample of tumor
tissue is removed so that doctors can study its
characteristics. The sample can be taken through an
open or surgical biopsy, or a needle biopsy. If the tumor
is difficult or impossible to resect (remove) safely, a
doctor may perform a needle biopsy to identify the type
of tumor and determine what treatment would be most
useful. If the tumor is surgically resectable, tissue
removed during the resection process can be examined
to confirm the diagnosis.
TREATMENT FOR GLIOMA
Treatment for a glioma usually begins with surgery
unless the location of the tumor makes surgery too risky.
The surgeon’s goal is to resect (remove) as much of the
tumor as possible with minimal harm to the patient.
Treatment can also be difficult because certain regions
of the tumor may be sensitive to a specific treatment,
while other regions of the same tumor are resistant.
Radiotherapy (RT) and chemotherapy may be used in
an effort to destroy tumor cells not removed during
surgery. Chemotherapy alone may be used if the age of
the child makes the risks of RT unacceptable.
Surgery
To remove a glioma, the pediatric neurosurgeon must
first gain access to the brain. This is usually done by
craniotomy or craniectomy. “Cranio” means skull.
“Otomy” means surgical incision. “Ectomy” means
surgical removal. For a craniotomy, the surgeon creates
a “bone flap” in the skull which is removed and put
back in place when the operation is over. For a
craniectomy, the bone is removed in pieces and not
replaced.
During surgery, the doctor may find that the glioma is
blocking the cerebrospinal fluid (CSF) pathway. In some
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cases, removing at least a portion of the tumor will
correct the problem. Sometimes, however, even when
the CSF pathway is open, it does not function properly.
In that case, the surgeon may insert a small plastic tube
called a ventriculostomy or external ventricular drain
(EVD) to avoid fluid buildup around the time of surgery.
Later, a more permanent internal shunt may be
inserted to keep the fluid circulating around the brain.
Another way to keep the fluid from building up is to
create a small hole in the floor of the third ventricle (a
third ventriculostomy). Sometimes steroids are given to
reduce swelling before, during, and after surgery.
The brain is a complex, sensitive organ, and doctors
and parents must understand and deal with the risks of
brain surgery. Despite these risks, surgery may be
essential to remove as much of the tumor as possible.
Studies show that two out of every ten children who
have brain surgery may develop serious aftereffects.
Examples include loss of speech, balance difficulties,
hormonal disorders, or growth disorders. These
problems may last for weeks, months, or longer. Speech
therapy, physical therapy, or occupational therapy can
help restore function to its maximum potential.
Staging
Staging determines if and how much a tumor has
spread beyond the site of its origin. To stage a tumor,
the doctor reviews scans taken before and after surgery,
and may also analyze samples of cerebrospinal fluid
(CSF) obtained through a spinal tap or bone marrow
obtained through a bone marrow needle biopsy. Usually,
a CSF and bone marrow examination is NOT required
for staging gliomas.
The extent of surgical removal is also used to stage a
tumor. Surgeons commonly designate surgical resection
as being total or near total, subtotal, partial, or biopsied
only. Total resection means that there is no visible
residual tumor under the operating microscope or on
the postoperative MRI, although there are always some
tumor cells left behind. Because of this, some surgeons
refer to this as a “gross total” resection to distinguish this
from the rare instances of a true total resection in which
the tumor as well as margin of normal tissue are
removed (which is rarely safe in the brain). Near total
means a small amount (less than 10%) of visible
residual tumor is left behind. Subtotal means 50%-90%
tumor removal, and partial means less than 50% tumor
removal. Ask your doctor to more fully explain the term
being used to describe the stage of your child’s tumor.
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Radiation Therapy (RT)
Radiation therapy, also called radiotherapy (RT), uses
x-rays to attempt to destroy tumor cells. In cases where
a tumor cannot be completely resected, survival rates
improve when RT is used after surgery.
The side effects of RT vary from child to child and are
most related to the dose received by the brain and the
age of the child. Radiation effects can be temporary or
permanent, occurring during radiotherapy or not until
months or years later.
Problems that can occur during radiation therapy
include fatigue, nausea or diminished appetite, skin
changes (like sunburn), hair loss, or difficulty swallowing.
RT can cause low white blood cell counts (leaving the
child susceptible to infection) or low levels of platelets
(important for clotting and healing). Your radiation
oncologist can often suggest ways to relieve some of
the symptoms seen during radiotherapy.
Later effects of RT include:
• RT to the entire brain can cause learning problems
noted several years after therapy. The effect of
irradiation on learning or on memory is quite
variable, but in general is more pronounced when
higher doses are used in younger children.
• Changes in growth can result from direct effects on
spinal bone growth or more commonly from a
reduction in growth hormone. Growth hormone, or
GH, is an important substance produced at the
base of the brain. GH is often diminished when
measured a year or more after radiation therapy. In
many cases, growth hormone can be replaced as a
medicine.
• Changes in other hormones, including thyroid
hormone and sometimes the hormones
responsible for sexual maturation during puberty,
can be noted at or beyond the one-year posttherapy point. When hormone levels are
inadequate, the hormones can be replaced with
medication.
Chemotherapy
Chemotherapy is the use of a single medicine or
combination of medicines to attack tumor tissue.
Chemotherapy can be taken by mouth, by injection, or
through an intravenous line (IV). Some therapies can be
given on an outpatient basis, while others require one or
more days in the hospital.
A glioma may be treated with chemotherapy to
destroy cells that remain after surgical removal of the
tumor. Chemotherapy is often used if the patient is a
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child under three years old and the doctor wishes to
delay or avoid RT. Chemotherapy may also be used for
instances in which the treatment team thinks that a
second attempt at surgical resection may be feasible
after an initial incomplete resection, in order to render
the tumor more amenable to resection.
If your child requires chemotherapy, it is helpful to
keep the following two facts in mind: (1) children do
not normally experience all possible side effects, and
(2) there are ways to relieve or offset many of them.
Among the side effects caused by chemotherapy are
hair loss, skin problems, nausea, vomiting, diarrhea,
constipation, changes in taste, fatigue, mouth sores,
seizures, hearing loss, kidney and liver problems, and
reduction of platelets, red cells, or white cells in the
blood. Remember: some of these problems may not
occur at all. Some may be temporary, while others may
be permanent.
Research is ongoing in an attempt to improve the
effectiveness and reduce the negative side effects of RT
and chemotherapy. If you are interested in learning
about clinical trials or studies that are testing new
approaches, ask your doctor, contact the National Cancer
Institute at http://www.cancer.gov/clinicaltrials, call the
PBTF at (800) 253-6530 or e-mail:
[email protected].
PROGNOSIS AND OUTCOME
The likely outcome, or prognosis, for a child with a
brain tumor depends on many factors, including:
• The age of the child
• The child’s overall health
• Exact location of the tumor
• How much the tumor has already affected the
child’s ability to function
• Degree of metastasis, especially the extent to which
the tumor has already spread when first found
• Degree of surgical resection
• The type of treatment received
Prognosis for recovery from a glioma is usually
poorest when the brain stem is involved, although
certain types of benign brainstem gliomas can often be
treated quite effectively. Outcome therefore depends on
the specific type of tumor affecting your child.
For most malignant gliomas, relative survival rates are
highest in people who are diagnosed before age 44.
Five-year rates for many gliomas are significantly higher
in children (age 19 or younger) than in adults. An
exception is ependymoma, which exhibits the highest
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relative survival rates in people between the ages of 20
and 44.
The highest two-year relative survival rate for all
gliomas in people diagnosed before age 19 is
associated with pilocytic astrocytoma (95 percent); its
five-year rate is 90 percent, with a rate of over 88
percent at ten years. Anaplastic astrocytoma has a twoyear relative survival rate of approximately 50 percent in
children, with a five-year rate of about 30 percent.
Oligodendroglioma carries a two-year relative survival
rate of nearly 85 percent in people under 19 years of
age, with a five-year rate of about 80 percent and a tenyear rate of almost 74 percent. Ependymoma has a twoyear relative survival rate of about 68 percent, a five-year
rate of 48 percent, and a ten-year rate of 41 percent in
children. For glioblastoma, relative survival rates in
people under age 19 are 30 percent at two years, close
to 20 percent at five years. (CBTRUS 1992-1997)
[PRECEDING PARAGRAPHS REVIEWED BY CBTRUS]
WHEN A TUMOR RETURNS
Most gliomas have the ability to progress to a more
malignant phase. If only part of the tumor is removed
(as in near total, subtotal, or partial resection),
recurrence is more likely. If tumor progression is
discovered, RT or chemotherapy may be recommended.
IN THE LONG TERM:
LIVING WITH A GLIOMA
More children than ever are surviving brain tumors.
Having survived, however, they and their families must
often deal with long-term effects caused by the tumor
or by the therapy used to treat the tumor.
Among the possible issues are:
• decreased levels of growth hormone
• decreased levels of thyroid hormone
• delayed growth
• reduced ability to think and reason
• impaired vision or hearing
• physical disabilities
• fatigue
• depression
• personality and attitude changes
• hydrocephalus
• seizures
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As distressing as these side effects can be, it is
important to remember that untreated children have
little chance of survival. The choice to do what it takes to
extend life carries with it a choice to accept the risk that
complications may occur. Your best defense is a good
offense. Educate yourself. Seek out other people who
are going through similar experiences, or who have
already been down the road you are traveling. Be
prepared. Don’t hesitate to ask questions, express
concerns, and seek more explanation when needed.
Many of the problems caused by brain tumors or
treatment can be offset. Hormone Replacement Therapy
(HRT) is used to overcome hormone deficiencies.
Physical therapy and occupational therapy are helpful to
children with impaired coordination. If a child has
difficulty talking, speech therapy may be useful.
Specialists can address vision and hearing problems. The
whole family can benefit from social support programs,
including individual, couples or group counseling. The
Pediatric Brain Tumor Foundation offers Family Support
Programs. For more information on family support
programs offered by the Pediatric Brain Tumor
Foundation call (800) 253-6530 or e-mail:
[email protected].
Even if there are no apparent complications, a child
who has had a brain tumor must be monitored closely.
Regular MRI or CT scans may be recommended by your
doctor for several years following surgery. Your doctor
may also recommend hormone evaluation and
neuropsychological testing. Talk with your doctor about
post-treatment monitoring of your child’s tumor.
Your child may sustain late effects from the glioma
itself and/or from treatments for the disease. After
completing treatment, there will be concern for
appropriate reintegration into school. This will require
school placement and interventions to deal with the
child’s particular learning needs. It is important for
parents to work with educators, the medical care team,
and the child to identify individual needs, which can
then be addressed with an Individualized Education Plan
(IEP). Information is available about this process from
the PBTF at (800) 253-6530 or e-mail:
[email protected].
Ongoing interaction will help to assure that your
child’s needs are addressed. Consultation with a
neuropsychiatrist or neuropsychologist may be helpful in
evaluating learning needs.
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CONCLUSION:
HOPE FOR TODAY AND TOMORROW
By now, you have probably discovered that when you
are dealing with a brain tumor, you do not travel in a
straight line from beginning to end. Instead, one step
forward can be followed by two steps backward,
followed by three steps forward, and so on. An attempt
to treat one complication may create other problems,
which then must be solved. Yet you also experience
small triumphs along the way, and you are always aware
that a major victory may be just around the corner.
As you continue on this difficult journey, we
encourage you to ask questions and express your
concerns. At the same time, seek out people and places
that give you energy and hope. Only when you are
nourished can you give of yourself to those who need
you.
We are making progress against gliomas. Every study
and clinical trial increases our understanding of this
tumor’s origin and behavior, improving our ability to
destroy it. One day, we will learn how to prevent it. And
with each advance, more and more children will be able
to enjoy a long and productive life.
ABOUT THE PEDIATRIC BRAIN TUMOR
FOUNDATION
The Pediatric Brain Tumor Foundation’s mission is to
find the cause and cure of childhood brain tumors. The
Ride for Kids® program started in 1984 in Atlanta,
Georgia as a way to raise funds to support pediatric
brain tumor research. This national fundraising program
has helped to make the PBTF the largest source of nongovernmental funding for pediatric brain tumor research
in the world. The PBTF offers family support programs
for families with a child who has been diagnosed with a
brain tumor. Programs include free literature about brain
tumors, the Helping Hand national newsletter, the
Informed Parent Internet Conference series and
scholarships for post-secondary education. For more
information about Ride for Kids® or the PBTF, please
call (800) 253-6530 or visit the Foundation’s websites
at www.pbtfus.org or www.ride4kids.org.
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Reference Library
The following resource literature and archived Internet
Conference audio compact discs are available to patient families,
medical professionals and social services specialists at no charge
by calling (800) 253-6530 or by emailing
[email protected].
1. Questions For Your Medical Care Team When Your Child Has a
Brain Tumor
2. Basic Facts About Pediatric Brain and Spinal Cord Tumors
3. Basic Facts About Medulloblastoma/PNET
4. Basic Facts About Juvenile Pilocytic Astrocytoma
5. Basic Facts About Astrocytoma
6. Basic Facts About Glioma
7. Basic Facts about Ependymoma
8. Helping Hand National Newsletter
9. Informed Parent Internet Series - The Importance of a
Multi-Disciplinary Approach to Treating Children with Brain Tumors
10. Informed Parent Internet Series - The Clinical Trials Process
11. Informed Parent Internet Series - School Re-entry Following the
Diagnoses and Treatment of Your Child’s Brain Tumor
12. Informed Parent Internet Series - Healing the Family
13. Informed Parent Internet Series - Growth and Development:
Endocrine Issues Facing Pediatric Brain Tumor Survivors
14. Informed Parent Internet Series - Post Traumatic Stress: Helping
Families Survive Childhood Cancer
15. Informed Parent Internet Series - Sibling Issues: The Impact of
Cancer on Healthy Siblings
16. Informed Parent Internet Series - Brothers & Sisters & Brain
Tumors: A Child’s Point of View of Coping with Cancer in
the Family
Pediatric Brain Tumor Foundation
302 Ridgefield Court
Asheville, NC 28806
(828) 665-6891 • (828) 665-6894 (fax)
(800) 253-6530
e-mail
[email protected]
[email protected]
[email protected]
websites http://www.pbtfus.org
http://www.ride4kids.org