Band of Parents
Encyclopedia
Band of Parents is a 501c3 nonprofit organization. Formed in July 2007 and incorporated in October 2007 the organization was founded by approximately 100 parents of young children with neuroblastoma
Neuroblastoma
Neuroblastoma is the most common extracranial solid cancer in childhood and the most common cancer in infancy, with an annual incidence of about 650 cases per year in the US , and 100 cases per year in the UK . Close to 50 percent of neuroblastoma cases occur in children younger than two years old...

 who were treated at Memorial Hospital, Sloan Kettering Cancer Center (MSKCC).

Mission

To fund cutting edge therapies and facilitate the development of novel therapies that would not otherwise be developed by research institutions or the pharmaceutical industry.

Neuroblastoma

Neuroblastoma is a form of childhood cancer which can develop at any age but typically present between the ages of 18 months and five years. It affects a little over 600 children per year in the US. Most children with neuroblastoma are diagnosed with advanced disease, stage IV. Even with aggressive therapy stage IV neuroblastoma carries a very poor prognosis with a three year survival rate of approximately 30-40%.

The Problem

Although there are more than 600 children in the US affected by neuroblastoma it is considered a rare disorder. Advances in cancer therapy are allowing therapies to become individualized and drugs such as immune therapies are targeted to a specific kind of cancer. Because of the rising cost of development of new drugs which is approaching $1 billion pharmaceutical companies are not likely to develop promising drugs which are specific to neuroblastoma or other rare disorders.

Projects

Hu3F8 - The organization's first project was the development of a humanized monoclonal antibody, Hu3F8. In addition to surgery, chemotherapy and radiation, many patients with neuroblastoma treated at MSKCC receive therapy using a murine (mouse derived) monoclonal antibody, 3F8
3F8
3F8 is a murine IgG3 monoclonal antibody which binds to GD2.It has been used in the detection and treatment of neuroblastoma. For imaging neuroblastoma, it is labelled with one of the radioisotopes iodine-124 and iodine-131....

. Given IV 3F8 has been effective at binding specifically to neuroblastoma cells and signaling an immune response causing destruction of the cancers cells. Because the antibody also binds to peripheral nerve cells treatments are painful but are generally without long term complications. While the impact of 3F8 on overall survival of neuroblastoma patients is not clear, the quality of life for patients receiving 3F8 may be significantly improved. The main factor limiting the effectiveness and use of 3F8 treatment is the eventual development of a neutralizing immune response (HAMA, Human Anti-Murine Antibody) by the patient to the mouse derived antibody (HAMA
Hama
Hama is a city on the banks of the Orontes River in west-central Syria north of Damascus. It is the provincial capital of the Hama Governorate. Hama is the fourth-largest city in Syria—behind Aleppo, Damascus, and Homs—with a population of 696,863...

, Human Anti-Murine Antibody) rendering it ineffective.

The Band of Parents first project was to raise an estimated $2–3 million to fund the genetic engineering of the mouse-hybrid cell line which produces 3F8 such that it would produce a new antibody, Hu3F8, using human genes. Hu3F8 is a humanized antibody with the same benefits as 3F8 but because of the antibody is 98% human it does not generate a neutalizing immune response. In theory this would allow children to be treated with this indefinitely. The Band of Parents succeeded in fully funding this project and drug development is underway.

Cell Mediated Immune Therapy - The Band of Parents board of directors is evaluating projects using cell mediated immunity for further funding.

Fundraising

In the first six months since the founding of the organization, it successfully raised the funds needed to develop Hu3f8. With the support of a worldwide base, this remarkable feat was accomplished in large part by parents who themselves were engaged in the active treatment of their children. Projects have included: "The Loneliest Road Campaign," a 3,000 mile bicycle ride across the US in 19 days by six fathers of children in active treatment; A Cookie Sale with cookies baked by the children, their families and supporters and The BoP Shop an online store featuring artwork of children with neuroblastoma.

See also

  • Help Fight Childhood Cancer
    Help Fight Childhood Cancer
    Help Fight Childhood Cancer is a distributed computing project that runs on the BOINC platform. It is a joint effort of Chiba University and the Chiba Cancer Center-Project Purpose:...

  • The Neuroblastoma Society
    The Neuroblastoma Society
    The Neuroblastoma Society is a UK charity that helps families affected by neuroblastoma by funding research and running a befriending scheme for parents. The charity was set up in 1982 by a group of parents whose children had suffered from or died of neuroblastoma....

  • Neuroblastoma Children's Cancer Alliance UK
    Neuroblastoma Children's Cancer Alliance UK
    The Neuroblastoma Alliance UK is a UK charity that helps children and families affected by neuroblastoma, a type of childhood cancer. The charity helps families by helping them fundraise for their child's treatment abroad, offering support and funding research into the condition .-History:The...

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