About the band of parents

BANDofPARENTSbound by hope

BANDofPARENTS bound by hope

The Band of Parents and Neuroblastoma What is the Band of Parents?
We are parents of children diagnosed with a cancer called neuroblastoma who want to help further the research and drug development
desperately needed to save more children. Neuroblastoma is an “orphan” cancer; pharmaceutical companies are not developing new treatments
because there is not a large enough patient base to make development profitable. Funding from the government is similarly limited. Time is
running out for many of our children -- money stands between them and a cure.

As parents, we have banded together to increase public awareness about neuroblastoma and to raise funds for the development of novel
therapies. We are working in partnership with a talented and dedicated team of doctors at Memorial Sloan-Kettering Cancer Center (MSKCC) who
are fighting to save our children from this deadly disease.

Who are the families in the Band of Parents?
The families in the Band of Parents come from across the
country and around the world. Cancer plays no favorites--
we are families of all races, religions, occupations, and
political views, bound together by a single fact: each of us
has a child diagnosed with neuroblastoma. Although some
are in remission, many of our children are fighting for their
lives right now. Because neuroblastoma can recur years
after treatment, the fear of losing our children is always
present. We wish to save these children and spare other
families this suffering. We passionately believe that we can
save lives by raising funds to support the new treatments
being developed at MSKCC.

What is neuroblastoma?
Neuroblastoma is a childhood cancer of the sympathetic
nervous system, affecting approximately 650 children in
the U.S. every year. It is the second most common solid
tumor in infants. Most children are diagnosed by 2.5 years
of age. Up to sixty percent of them have high risk disease that has metastasized (spread to other parts of the body) by the time they are
diagnosed. Survival is dependent on age and disease stage: children diagnosed before the age of 18 months have a high survival rate, but high
risk children diagnosed before age 5 have about a 30 percent chance of growing up. For children over age 5, teens, and adults, the prognosis is
very poor.

What is the treatment for neuroblastoma?
For children with lower stages of disease and favorable risk factors, surgery and/or some chemotherapy may be sufficient treatment. Children with
high risk disease typically receive multiple rounds of harsh, high-dose chemotherapies, radiation, surgeries, and retinoid therapy. In addition,
many undergo stem cell transplantation, immunotherapy and other painful treatments. Life is disrupted for the entire family--constant visits to the
cancer clinic are required and weeks are spent in the hospital. It is common for families to travel to different parts of the country and even the
world seeking treatment options for their children.

The Band of Parents and Memorial Sloan-Kettering (MSKCC)

What is Memorial Sloan-Kettering Cancer Center? Who makes up the neuroblastoma team?
MSKCC in New York City treats more children with neuroblastoma than any other hospital in the world. Every day approximately 35-40 children with
neuroblastoma are treated in MSKCC’s Pediatric Day Hospital and in-patient unit.

MSKCC has a world-renowned multidisciplinary team of physicians and scientists solely dedicated to the treatment, control, and cure of
neuroblastoma.   In contrast, most hospitals do not have specialists in neuroblastoma treatment on staff. Dr. Nai-Kong Cheung is the head of the
Neuroblastoma Program and chief researcher. Dr. Brian Kushner, Dr. Kim Kramer and Dr. Shakeel Modak are the team’s full time clinicians and
researchers. Drs. Michael LaQuaglia (Chief of Pediatric Surgery) and Mark Kayton perform neuroblastoma and ancillary surgeries and practice
surgical techniques performed only at MSKCC. Dr. Mark Souwedaine is the pediatric neurosurgeon who operates on tumors that have
metastasized to the brain or spine. Radiation therapy is under the direction of Dr. Suzanne Wolden. The neuroblastoma team also includes a
large team of highly skilled pediatric nurse practitioners, research nurses specially trained in administrating biologics, and a full-time social worker.

What progress has the MSKCC Neuroblastoma team made in the treatment of neuroblastoma?
In the 1980s, fewer than 5% of children diagnosed with high risk neuroblastoma survived. Although intensified chemotherapy and radiation
treatments improved the chances of killing this vicious cancer, many children suffered severe side effects--including developing other forms of
cancer caused by the treatments themselves!

In 1987, the MSKCC team began treating children with 3F8, a monoclonal antibody developed by Dr. Cheung. 3F8 can attach to neuroblastoma
cells and kill them, and can also train the child’s own immune system to attack and kill neuroblastoma. In the last 2 decades, 3F8 treatment notably
improved survival, without lasting side effects.

Today, 80 percent of children with high risk neuroblastoma treated at MSKCC from diagnosis achieve remission. More than 50% of these patients
are expected to remain in remission after consolidation with 3F8/GMCSF immunotherapy.

What innovative projects are on the horizon?
The 3F8 antibody has shown amazing success in eradicating high-risk chemo-resistant neuroblastoma infiltrating the bone marrow. Still, about 20
percent of those diagnosed with this deadly cancer never reach remission, and some of those in remission see their cancer return.

Because 3F8 is made from mouse antibodies, many children develop immunity to it, making further 3F8 treatment ineffective. For those who form
immunity too soon, the problem is huge—their disease is likely to return or progress. Thus, one of the most exciting projects is the development of
a “humanized” 3F8 antibody (HU3F8) that would avoid this problem.

Another problem doctors have recognized is that the white blood cells of some children have a low “affinity” for 3F8, so their immune system does
not learn to attack the cancer on its own. In humanizing 3F8, scientists hope to genetically engineer the antibody to correct this problem.

The specialists in neuroblastoma at MSKCC believe developing HU3F8 is a priority because it could save even more children. In addition, HU3F8
could potentially be used long-term to prevent neuroblastoma relapse.

The MSKCC team also is developing other innovative treatments, such as vaccines intended to strengthen a child’s immune system against
neuroblastoma, ways to improve the tumor-killing activity of 3F8, and antibodies that bring liquid radiation directly to tumor cells. In recent years a
new antibody, 8H9, has been successful in killing neuroblastoma that has recurred in the central nervous system — a type of relapse that was 100
percent fatal just 5 years ago. The 8H9 antibody may have great promise as a systemic treatment, but more research is needed to understand its
workings.

How much is a child’s life worth?
One problem all childhood cancer patients face is the lack of money for research. We are thankful there are not more children diagnosed with
cancer. However, the relatively low number of diagnoses means that finding new treatments for childhood cancer is not profitable for drug
companies. Most drugs used on children today were developed for adults 20 to 30 years ago.

MSKCC already provides the antibody 3F8 to families at no cost.   The researchers estimate that it would take $2-3 million to develop HU3F8 and
additional funds to conduct the clinical testing to save even more children from neuroblastoma, but funding is not available both to continue
providing the mouse 3F8 that is saving many children now, and also develop the humanized form.

Does MSKCC think that parents can really make a difference in the fight against childhood cancer?
Asked for his thoughts about the Band of Parents, Dr. Richard O’Reilly, Chair of the Department of Pediatrics, said “Over the past decades,
patients treated at MSKCC and their families have been extraordinarily generous supporters of the hospital and its research. It is unique for the
parents of children with a specific cancer to band together in such numbers to raise funds for a cure. High risk neuroblastoma is one of the
deadliest pediatric cancers, and MSKCC shares the determination and the urgency of these parents to find a cure. Raising funds to cure cancer is
a challenging endeavor even for professionals, but this is an extraordinary group of parents committed to the long haul, and their efforts will surely
make a difference in the lives of children fighting this vicious disease. We are honored to partner with parents in this endeavor.”

Time is running out for many of the children diagnosed with this deadly disease. We the Band of Parents truly need your
help. Faced with a lack of funding from the government—and a lack of interest from the pharmaceutical industry,
neuroblastoma stands to win. Without the help and support of individuals like you the Children fighting this disease today
and those who will be unfairly chosen to fight tomorrow will have no better chance of winning than they do today. Please
consider making a donation to help us fund a cure.

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
Since we are made up purely of parent volunteers ,100% of your donation will advance the promising new neuroblastoma
treatments being developed at Memorial Sloan-Kettering Cancer Center.

You CAN make a difference.

Thank you for joining us in our struggle. Thank you for giving our doctors the resources they need in order to give our
children the chance to grow up.