Neuroblastoma Conference

Registration is open! The CNCF's Neuroblastoma Conference for Parents and Caregivers is scheduled to be hald at the Hyatt Regency McCormick Place in Chicago, Illinois from Thursday July 16 - 19, 2009.  Click here to learn more and to register.

Ch14.18 Increases Survival!

On March 19, 2009 the Children's Oncology Group (COG) released the results of their phase III randomized study ANBL0032 which showed that the use of the ch14.18 monoclonal antibody significantly improved survival for children with high risk neuroblastoma when given after transplant. Please see the announcement here. 
 
The CNCF has developed a series of articles in our blog entitled "Under the Microscope" to help you understand these findings. They can be found below:

Information on ch14.18 and antibody therapy can also be found in the Neuroblastoma Hanbook here.

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.

Get the eNewsletter

Do you want to stay in touch? Do you want to know what is going on the front in our fight against neuroblastoma. Sign up to receive the CNCF's eNewsletter and you will always be informed. Where? What? and How? - You will find the answers here.


Upcoming Events

April 19, 2009
Fore Noah Golf Tournament Raffle and Auction
The 5th Annual Fore Noah Golf Tournment aims to raise $75,000 for the CNCF.  This is a very important fundraiser for the CNCF.  The tournament, auction, and raffle willl be held at the Long Bow Golf Club in Mesa, Arizona.  For more information contact them at alnelson@cox.net
May 4, 2009
Allie and Friends Golf Classic
Join Ryan Diem of the Indianapolis Colts on Monday, May 4, 2009 for the 5th annual “Allie & Friends Golf Classic” at Boulder Ridge Country Club in Lake in the Hills, IL.  For more information click here.
July 17-19, 2009
The Neuroblastoma Conference for Parents and Caregivers
Mark your calendars!  The CNCF's Neuroblastoma Conference for Parents and Caregivers is scheduled to be hald at the Hyatt Regency McCormick Place in Chicago, Illinoisfrom Thursday July 16 - 19, 2009.  Click here to learn more and to register.

Promotions

The Neuroblastoma Awareness Bracelet is now available.  This beautiful bracelet is a great gift for the holidays, birthdays, anniversaries or any occasion.  All proceeds benefit the CNCF.
The traveling neuroblastoma awareness campaign is on to it's next three month showing at Cook Children's Medical Center in Fort Worth, TX.  In the meantime, the gallery has been brought to the web where you can see some of these inspirational works first hand.  The is Life -Through the Eyes of a Child Living with Neuroblastoma.
The Lunch for Life Cookbook is a collaboration of families of children with neuroblastoma.  Over 100 families contributed their absolute best recipes to the production of this cookbook.  Not only will purchasing this cookbook go along way in aiding our quest for a cure but we believe you will also be receiving some of the best recipes on the planet.

Call for Proposals Postponed

The 2008 - 2009 Call for Proposals has been postponed until later in 2009.  Please check back for further details.

Articles

As adults, all survivors of neuroblastoma, like all survivors of a childhood cancer, face many long term effects, including the risk of a secondary malignancy. Adult women who received chest radiation as part of their childhood treatment (as part of total body irradiation or localized tumor control) are at a significantly increased risk of breast cancer.
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. .

CNCF On the Web

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.

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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: adult survivor

    Nicole: I cannot tell you how special it is to read about someone who has had similar experiences to me. Growing up, I thought that I was one of the only ones having these medical experiences, and I always wanted someone to talk with that had similar experiences to me that I could talk to...basically, someone that could understand what I was going through...
    Posted to Cope (Forum) by Mariah1800 on 07-01-2009

  • Re: Quuestion about post treatment

    Katie: I am not an expert in the children department, but I had a few ideas from when I was little. By the way, I am a 30-year-old neurboblastoma survivor (I placed a posting earlier tonight about me). I had a tumor wrapped around my heart and spine and was diagnosed at the age of 1...there was really nothing that could be done for me, so I became an...
    Posted to Cope (Forum) by Mariah1800 on 07-01-2009

  • Re: Reoccuring Stage IV Neuroblastoma not responding

    Rebekah: In your posting, you asked to hear about any miracle stories...well, I have always been told that I am a miracle story! I just started a thread, but in case you did not see it, here is my story. I am a 30-year-old neuroblastoma survivor. I was diagnosed at the age of 1, with a tumor wrapped around my heart and spine. At the time, there was...
    Posted to Cope (Forum) by Mariah1800 on 07-01-2009

  • 30-Year Old Experimental Patient Survivor--Eager to Answer ?s, Offer Support

    My name is Mariah and I am a 30-year-old neuroblastoma survivor. At the age of 1, I was diagnosed, and I had a tumor wrapped around my spine and aorta. At the time, there was nothing that could be done for me, so my parents agreed to let me be an experimental patient at Mayo Clinic in Rochester, Minnesota. The cancer was cured after many years of chemotherapy...
    Posted to Cope (Forum) by Mariah1800 on 07-01-2009

  • 1314 Finding Other Families: Listservs and On-line Communities

    Download printable version: 1314 Finding Other Families: Listservs and On-line Communities After our children were diagnosed with neuroblastoma, most of the parent authors of this Handbook felt alone in a way never known before. Family and friends circled around us in support, many of them with stories of family members and friends who had been cured...
    Posted to NB Parent Handbook (Weblog) by Editors on 07-01-2009

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