There is currently a phase I study that uses DFMO in children who have relapsed neuroblastoma. This study drug is the one that Will has been taking since May of 2010 and he has absolutely no side effects from this drug and his blood counts are normal. He goes to school, plays soccer, baseball, hockey and lives life like a normal kid. There is a phase II study written that is designed to offer this same drug and quality of life to kids who have relapsed and then HAVE gotten into remission. When your child has relapsed NB the long term survival is abysmal and if you get them into remission it is remarkable. However, you KNOW it is going to come back. You KNOW that somewhere inside there is a silent pocket of disease just waiting to explode in the next 6 - 12 months after hearing those glorious words NED. These kids need to take something to PREVENT relapse but since they do not have any visible disease they do not quality for almost every single relapsed NB study. This phase II study aims to help change that.
These kids are so heavily pre-treated that their bodies need a chance to recover while still taking something. This is the PERFECT drug for these kids. They are NED, their bodies can recover, their marrow function return, and they can take a drug to PREVENT relapse. A drug with no side effects and that has kept kids with active disease from progressing. This is such an important study that it needs to open soon. Funding will happen "someday" but between today and someday there are kids dying. There are kids who have reached NED for a second time who need this. There are kids who will relapses before getting a chance to try this - there is a wonderful opportunity here to impact survival.
Add your non-profit or corporation to the list below and help save these kids. Email pat@beatNB.org or call 781-519-9787 to learn more. If you'd like to make a smaller donation online you can do so here.
Pledged: $160,000 Goal: $500,000
An anonymous NB parent foundation pledged $50,000
Friends of Will has pledged $50,000
Christopher's Mark Foundation has pledged $25,000
Melina's White Light has pledged $20,000
NB Alliance has pledged $15,000
