The NB Handbook

The Children’s Neuroblastoma Cancer Foundation (CNCF) is proud to launch the online version of the CNCF Handbook for Parents of Children with Neuroblastoma.  The handbook was developed by and for families affected by neuroblastoma.

Please click here to explore the handbook!  

Also, please don't forget to tell others about the handbook.  Click here to find out how to spread the word.

Upcoming Events

September 5, 2008
Life. Through the eyes of a child living with neuroblastoma.  The Fort Worth Community Arts Center will be hosting the opening night of this aptly named art collection.  Photography by Geno Loro focuses on children with neuroblastoma.  This awareness event will mark the beginning of a 3 month showing. Find out more here.
September 9, 2008 - 12:00 PM CST
Online Seminar - Sodium Thiosulfate in Preventing Hearing Loss.  Dr. David Freyer from the Children's Hospital of Los Angeles will be presenting information regarding the research that led to this trial and provide an overview of the trial and its eligibility.  Register for this live online seminar here.
September 24, 2008
Stand-Up for Life
Join us at The Improv in Addison, Texas at 8:00 PM for a night of comedy with comedians Aaron Aryanpur, Peter Barrera, Justin Foster and hosted by Honor Shearer.  All proceeds from the even will benefit the CNCF.  Tickets are available at http://www.improv.com/ or at the door.

Articles

An interesting article was recently published in the January 15, 2008 edition of Clinical Cancer Research.  The article, “Sodium Thiosulfate Administered Six Hours after Cisplatin Does Not Compromise Antineuroblastoma Activity”(1)...

Videos

A touching video on neuroblastoma.  All children festured in this video have been touched by neuroblastoma.  It is an important look into what these children need.
Our YouTube channel is here to share our stories, provide hope and awareness, and to provide important medical interviews about neuroblastoma and it's treatment. .

Recommended Hosts

Join the CNCF on Facebook here you will find more ways to connect to make a difference.>
Yes, CNCF is on YouTube as well. Please visit, watch some of our spectacular videos, and share your own.
Do you have space on MySpace. So do we. Visit us often.
Did you miss some of our educational conferences and seminars. Get them on Google Video.

Welcome!

Welcome to the Children's Neuroblastoma Cancer Foundation website!

Your child has been diagnosed with neuroblastoma. Welcome, you’re not alone.  The Children’s Neuroblastoma Cancer Foundation (CNCF) supports families living with this disease. We’re the primary source for the most current, reliable information and resources available.  Providing a forum for patients and family members, our educational services bring together clinicians, researchers and medical experts.

Please join hands with ours.

CNCF educates the public of a disease lacking in awareness and funding. We serve as an advocate for appropriate legislation, as well as a liaison between healthcare providers and families.
And of course, hope. We bring that too. Emotional support is shared amongst all whose lives are affected. Hope is what unites us. It’s what keeps us fighting. It keeps us from losing sight of our overall mission. To find a cure.

We can’t change the circumstances. But together, we can change the outlook.

We know what you’re going through. CNCF is made up of families just like yours. We care. And we’ll keep you informed.

FAQs. Fundraising options. Online forums. The latest research overviews. Strategies to help you cope. Let our website be your best resource. Log on and sign up for email updates and newsletters. We’ve even created a virtual medical file you can download to help document doctor visits and test results.

CNCF Support Services

  • Maintain a forum for patients and family members, including educational services bringing together clinicians, researchers and other medical experts.
  • Share information concerning symptoms, diagnosis, treatment and care.
  • Provide emotional support for parents and siblings.
  • Maintain a website and newsletter for ongoing communication.
  • Provide tools to simplify medical record-keeping.

What's New

  • Re: Amplified N-MYC Question...

    Hi Debbie! Just wanted to send you a hug....I don't really know the answer to your question, but we are on the opposite end of the spectrum and, like you, find there is very little data around that answers our specific questions. Our son was stage III, high risk, but presented with OMS. They suggest it may actually have helped him, but like you...
    Posted to Cope (Forum) by dawnie on 09-01-2008
  • Amplified N-MYC Question...

    My son Connor is one of the luckier ones, stage one diagnosis of NB last 9/6/07 at the age of 17 months...unfortunately he has OMS as well (caused by the neuroblastoma) that is his major battle now that the tumor is out. My question is regarding the N-MYC gene. Connor's came back amplified-VERY rare for an OMS/NB child to have the amplified gene...
    Posted to Cope (Forum) by dlkhoury on 09-01-2008
  • Re: Anyone else have a child who also had/has OMS?

    Hi Dawn, Just wanted to let you know that there are more of us parents dealing with OMS with an NB diagnosis. My son Connor was diagnosed with neuroblastoma 9/6/07 at age 17 months, eight weeks after opsoclonus symptoms began. His tumor was in his pelvis, found only after he began having myoclonus in his legs along with the eye symptoms. Until then...
    Posted to General (Forum) by dlkhoury on 09-01-2008
  • Re: any relation between birth mark and NB

    My son has a cafe-au-lait spot on his left shin, but it's the only one. It piqued his oncologists interest when she first saw it, but she didn't say much other than what I had already read (the same research presented here).
    Posted to Medical (Forum) by Heather on 08-31-2008
  • Re: Anyone else have a child who also had/has OMS?

    Wow, Heather! We are for sure a rare group here....stage III and your son is stage IV with OMS! Aren't we the oddballs of the world. We even had a doctor at the NB conference insist that our son couldn't be high risk, and even suggest that he likely wasn't stage III, because he had OMS too. It's just not something even some of the "experts"...
    Posted to General (Forum) by dawnie on 08-29-2008

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