Band of Parents

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 who were treated at Memorial Hospital, Sloan Kettering Cancer Center (MSKCC). Since its founding, the Band of Parents has grown into the largest single funder of Neuroblastoma research at MSKCC.[1][2][3][4]

Mission

To fund cutting edge therapies and facilitate the development of novel therapies for Neuroblastoma 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%. [5]

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. 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, 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 Hu3f8 is currently being used daily to treat children at MSKCC. [6]http://clinicaltrials.gov/ct2/show/NCT01419834

In March 2013, the Band of Parents led a group of non profit organizations in providing a $2 million grant to Memorial Sloan Kettering Cancer Center to fund a bispecific antibody targeting Neuroblastoma. [7]

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,"[8] a 3,000 mile bicycle ride across the US in 19 days by six fathers of children in active treatment; A Cookie Sale[9] with cookies baked by the children, their families and supporters and The BoP Shop an online store featuring artwork of children with neuroblastoma. In 2012 the Band of Parent began an annual gala event called the Evening of Hope which has become its major annual fundraising event. [10]

References

  1. ↑ http://www.nydailynews.com/life-style/health/father-talia-castellano-seeks-cure-cancer-article-1.1413036
  2. ↑ http://mskcc.convio.net/site/PageServer?pagename=giv_involved_cee_honor_roll
  3. ↑ http://www.mskcc.org/sites/www.mskcc.org/files/node/17174/image/mskcc-ar-2011-complete.pdf, page 52
  4. ↑ http://www.mskcc.org/sites/www.mskcc.org/files/node/19524/image/2012annualreport-final.pdf, page 27
  5. ↑ Schmidt ML, Lal A, Seeger RC; et al. (September 2005). "Favorable prognosis for patients 12 to 18 months of age with stage 4 nonamplified MYCN neuroblastoma: a Children's Cancer Group Study". J. Clin. Oncol. 23 (27): 6474–80. doi:10.1200/JCO.2005.05.183. PMID 16116154.
  6. ↑ http://clinicaltrials.gov/ct2/show/NCT01419834
  7. ↑ http://www.nydailynews.com/life-style/health/father-talia-castellano-seeks-cure-cancer-article-1.1413036
  8. ↑ http://www.loneliestroad.org
  9. ↑ http://www.cookiesforkidscancer.org
  10. ↑ http://www.stayclassy.org/stories/the-band-of-parents-evening-of-hope-benefit-raising-over-150000-for-neuroblastoma-research

External links

See also

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