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BANDofPARENTS bound by hope
What would you do if you were
told your child had a cancer for
which there was no known cure?
Most parents cannot imagine such unspeakable
despair. But we have heard those words, and are
trying desperately to save our children. We want a
cure for every child who is battling neuroblastoma, a
lethal childhood cancer of the sympathetic nervous
system that affects approximately 650 children in
the U.S. every year. Only about 30% of those
diagnosed survive it.
HIGH RISK TREATEMENT
As of 2007, our children's only chance of survival is to undergo one
of the most intense cancer treatments. The standard treatment for
neuroblastoma offers no guarantees and virtually all children who
do survive have significant side effects, including sterility, heart
problems, learning defects, hearing loss, and the high risk of
secondary cancers caused by the treatment itself. Most children
will undergo numerous rounds of high dose chemotherapy,
complicated surgeries, intense radiation therapy, endless x-rays,
and scans that expose them to levels known to be dangerous.
Children will also be subjected to numerous drugs and medicines
often not developed or even proven safe for children.
The treatments are torture for children to undergo and emotionally
devastating for parents to watch. Kids lose their hair and pink
cheeks, become vulnerable to serious infections and viruses when
chemotherapy destroys their immunity, and cry in pain during
countless invasive procedures. And it is unbearable to know that
70% of these children will still die in their anguished parents' arms,
their bodies overcome by a ruthless killer and their eyes full of fear
and confusion, not understanding why their loving parents and
committed doctors could not make them better.
told your child had a cancer for
which there was no known cure?
Most parents cannot imagine such unspeakable
despair. But we have heard those words, and are
trying desperately to save our children. We want a
cure for every child who is battling neuroblastoma, a
lethal childhood cancer of the sympathetic nervous
system that affects approximately 650 children in
the U.S. every year. Only about 30% of those
diagnosed survive it.
HIGH RISK TREATEMENT
As of 2007, our children's only chance of survival is to undergo one
of the most intense cancer treatments. The standard treatment for
neuroblastoma offers no guarantees and virtually all children who
do survive have significant side effects, including sterility, heart
problems, learning defects, hearing loss, and the high risk of
secondary cancers caused by the treatment itself. Most children
will undergo numerous rounds of high dose chemotherapy,
complicated surgeries, intense radiation therapy, endless x-rays,
and scans that expose them to levels known to be dangerous.
Children will also be subjected to numerous drugs and medicines
often not developed or even proven safe for children.
The treatments are torture for children to undergo and emotionally
devastating for parents to watch. Kids lose their hair and pink
cheeks, become vulnerable to serious infections and viruses when
chemotherapy destroys their immunity, and cry in pain during
countless invasive procedures. And it is unbearable to know that
70% of these children will still die in their anguished parents' arms,
their bodies overcome by a ruthless killer and their eyes full of fear
and confusion, not understanding why their loving parents and
committed doctors could not make them better.
REALITY
Why is there no effective treatment for advanced neuroblastoma? The answer is simple and devastating: There is not enough
money for research. Yet, consider this: Since the 1950s the rate of kids surviving leukemia shot from 10% to 80%. Similarly, the
survival rates for other types of cancers like, Breast Cancer for example, have also improved significantly thanks to extensive
research that uncovered innovative and less invasive treatment options. Children diagnosed with cancer are faced with a
reprehensible lack of funding from the government—and a shameful lack of interest from the pharmaceutical giants, because
orphan diseases like neuroblastoma promise little or no profit. Unfortunately no profit leaves pharmaceutical companies with little
to no incentive to develop treatments. Children diagnosed with neuroblastoma deserve better odds of survival on par with most
other cancers.
Cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. But
pediatric cancers collectively receive less than 3% of the National Cancer Institutes $4.7 billion dollar annual budget.
For every dollar spent on a patient with breast cancer, less than 30 cents is spent on a child with cancer. Aren't
children our most precious resource? How can you put a price on a child's life?
BOUND BY HOPE
Against this bleak scenario, a group of ordinary parents bound by extraordinary circumstances founded the Band of Parents. Our
mission is to raise money to further support and accelerate the research of the talented and dedicated team of doctors and
scientists at Memorial Sloan-Kettering Cancer Center (MSKCC), the institution that treats more cases of neuroblastoma than any
other hospital in the world. Our kids' doctors are investigating exciting treatment options that they believe could help save more
children with neuroblastoma.
The institution is working on several pioneering treatments including a humanized version of the 3F8 antibody, used exclusively at
MSKCC. The mouse-based 3F8 antibody attaches to neuroblastoma cells and kills them. The antibody, developed by MSKCC's
Dr. Cheung, also trains a child's immune system to attack and kill neuroblastoma. Since first used in 1987, 3F8 treatment has
greatly improved survival without lasting side effects. The mouse-based antibody’s primary drawback is that it can be rejected by
the child’s own immune system (HAMA). It is believed a humanized version would alleviate this issue and make it more effective for
a greater number of patients. The cost to develop this treatment is estimated to be just $2 – 3 million, a small sum by today’s
standards.
HOW YOU CAN HELP
Lack of money bars the way, and time is running out for many of these kids. Today hope lies with private
institutions, generous donors, and dedicated researchers, who have made it their mission to discover safer, more
effective treatments and a cure.
We as the parents of children diagnosed with this relentless cancer are reaching out in hopes that you will help.
Won’t you please support the research so urgently needed to give all the kids fighting neuroblastoma today, and
those who will be so unfairly chosen to fight tomorrow, the hope all children deserve?b
Why is there no effective treatment for advanced neuroblastoma? The answer is simple and devastating: There is not enough
money for research. Yet, consider this: Since the 1950s the rate of kids surviving leukemia shot from 10% to 80%. Similarly, the
survival rates for other types of cancers like, Breast Cancer for example, have also improved significantly thanks to extensive
research that uncovered innovative and less invasive treatment options. Children diagnosed with cancer are faced with a
reprehensible lack of funding from the government—and a shameful lack of interest from the pharmaceutical giants, because
orphan diseases like neuroblastoma promise little or no profit. Unfortunately no profit leaves pharmaceutical companies with little
to no incentive to develop treatments. Children diagnosed with neuroblastoma deserve better odds of survival on par with most
other cancers.
Cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. But
pediatric cancers collectively receive less than 3% of the National Cancer Institutes $4.7 billion dollar annual budget.
For every dollar spent on a patient with breast cancer, less than 30 cents is spent on a child with cancer. Aren't
children our most precious resource? How can you put a price on a child's life?
BOUND BY HOPE
Against this bleak scenario, a group of ordinary parents bound by extraordinary circumstances founded the Band of Parents. Our
mission is to raise money to further support and accelerate the research of the talented and dedicated team of doctors and
scientists at Memorial Sloan-Kettering Cancer Center (MSKCC), the institution that treats more cases of neuroblastoma than any
other hospital in the world. Our kids' doctors are investigating exciting treatment options that they believe could help save more
children with neuroblastoma.
The institution is working on several pioneering treatments including a humanized version of the 3F8 antibody, used exclusively at
MSKCC. The mouse-based 3F8 antibody attaches to neuroblastoma cells and kills them. The antibody, developed by MSKCC's
Dr. Cheung, also trains a child's immune system to attack and kill neuroblastoma. Since first used in 1987, 3F8 treatment has
greatly improved survival without lasting side effects. The mouse-based antibody’s primary drawback is that it can be rejected by
the child’s own immune system (HAMA). It is believed a humanized version would alleviate this issue and make it more effective for
a greater number of patients. The cost to develop this treatment is estimated to be just $2 – 3 million, a small sum by today’s
standards.
HOW YOU CAN HELP
Lack of money bars the way, and time is running out for many of these kids. Today hope lies with private
institutions, generous donors, and dedicated researchers, who have made it their mission to discover safer, more
effective treatments and a cure.
We as the parents of children diagnosed with this relentless cancer are reaching out in hopes that you will help.
Won’t you please support the research so urgently needed to give all the kids fighting neuroblastoma today, and
those who will be so unfairly chosen to fight tomorrow, the hope all children deserve?b
The odds for children with stage iv neuroblastoma: of the three patients in
this May 2006 photo, only the girl is alive today.
this May 2006 photo, only the girl is alive today.
Band of Parents, Inc. a/k/a Band of Parents is a not-for-profit corporation duly incorporated under the laws of the
State of New York. Band of Parents is a 501(c)3 public charity. Your donations are tax-deductible to the full extent
of the law
State of New York. Band of Parents is a 501(c)3 public charity. Your donations are tax-deductible to the full extent
of the law