Tuesday, July 15, 2008

The Neuroblastoma Handbook

Over the past few weeks I have mentioned that I have a big announcement to make. In fact, it won't even be officially made until Saturday. Ironically, I won't even be the one making it. However, since you are part of the secret twerp society that exists within my own private, secret diary I really have no problem making an early announcement here. I mean, after all, it is just between you and I. This announcement, however, is enormous; not only for the families of children with neuroblastoma today but also for those unfortunate enough to step into our world in the future. It is a monumental first.

On Saturday, at the CNCF Conference in Chicago, the online version of the NB Handbook for Parents will be unveiled. This guide, written by families touched by neuroblastoma and reviewed by some of this nation's greatest researchers, contains important details that any family of a child with neuroblastoma needs to know. It is a resource like no other. It is a living book which will continue to grow and change over the years but is always meant to contain the most current and relevant information available. This is a huge step for the families of neuroblastoma. It is one-of-a-kind.

Now, I would love to take credit for the handbook but, to be honest, there were many others that had far more to do with it than I. I have just been a cog in the wheel happy to help get it online. I have also had the opportunity to review (and argue about:))some of the sections and am extremely proud of what has been created. It certainly has my stamp of approval and I can guarantee you that it will be one of the resources that I continually refer to. I can tell you already that there have been many things that I have learned that I did not know about neuroblastoma just by reviewing some of the materials. It is an incredible resource. Big thanks have to go out to Donna Ludwinski, Shirley Staples, and Jennifer Click (our chief editors) and, of course, to the many, many people who contributed articles to the effort.

Now, the trick is, you can't tell anyone that I let the cat out of the bag. However, I need your help to review it and share your thoughts on it's ease of use, etc. Could you take a look at it and give me your thoughts? I should first tell you that not all of it is up. However, many of the most helpful sections are. Keep in mind, it is still somewhat hidden. I can assure you that once it is launched it will be easy for everyone to find. In the meantime, it is only available through this link:
Take a look, but remember ,you can't tell anyone about it until next week.

Today is one large step for purpose.


linlassie said...

Well you asked for feedback, so here is my 2 cents worth.

just disclaimer, I am fortunate enough so far that this beast has not touched my life or wnyone that I am close too.

I do however have a thirst for research into diseases such as neuroblastoma, my next life I will be a full fledged researcher!!

I find the site easy to navigate simple to read and excellent content.

I do have one issue and that is with the font used in the Logo, I find it difficult to read in particular the statement "bringing hope to neuroblastoma families" I think your point is being missed, the font type and size does a disservice to the intent.

That being said, should I ever require or know someone who requires this handbook I will recommend it.

Kimela said...

The book looks like it will be a great resource for parents. I love the fact that this book has been done. Once a parent has been told that their child has cancer I know that everything can be a blur after that. This book will help the parents focus and will answers some of their questions. It will also make them feel like they are not alone in this new and life changing battle they are about to face.
Keep up the good work!