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Childrens Neuroblastoma Cancer Foundation

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Nonprofit Overview

Causes: Cancer

Mission: To assist in finding a cure for neuroblastoma cancer in children; to educate the public and pediatricians concerning the above cancers and concerning the need for increasing funding for the detection, treatment and ultimate cure of these cancers; to provide grants for support of research studies.

Programs: The neuroblastoma cancer conference and related events help educate parents, caregivers, and young adult patients to find clinical trials for treatment and learn about current research that is being conducted. A parent handbook is provided to all families affected by neuroblastoma. Volunteers help at numerous fundraising events throughout the year.

the organization typically issues grants annually for neuroblastoma research. In 2014, in addition to the $10,500 paid, an additional $100,000 was paid for grants that were issued in 2013.

Community Stories

1 Story from Volunteers, Donors & Supporters

2

General Member of the Public

Rating: 5

My life changed the day my daughter was born. I know, I know, every parent's life changes when they have children, but Maddie was different; she was born with a stage IV Neuroblastoma, a rare solid, malignant tumor of the sympathetic nervous system. There were tumors in two places: her spine at T-11 and a nice big tumor by her left kidney encasing two nerves. We knew there was a serious issue immediately at birth since she failed the Agpar test (we tease her that this was the only test she has ever failed :) ). In utero, the tumor had retarded much of the muscle development from her waist down.

We support CNCF http://www.cncfhope.org/ for two reasons:

1) Maddie is alive today because of a standardized protocol to treat children from age 0 to 364 days old who are diagnosed with a stage IV Neuroblastoma; this is in large part due to organizations like CNCF who advocate for the development of treatments and the standardization of these treatments across geographies. She fought the disease through spine surgery and chemo for her first year of life and has been cancer free since 11 months old.

2) Children who are diagnosed with a Neuroblastoma after 364 days have less optimistic results. At day 365, life expectancy begins to drop precipitously; the median age of diagnosis is 2 years old. Continued funding for research and early detection needs to continue to provide other children the opportunity my daughter had.

Maddie was lucky in the fact that she manifested the disease at birth, but many children don't manifest until much, much later and the results are devastating.

The photo is of her in a color run from a few years back.

Review from #MyGivingStory