What is Band of ParentsWe 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.
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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.
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.
The Band of Parents & 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. Dr. Michael LaQuaglia (chief of Pediatric Surgery) performs 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. |