Thursday, August 6, 2009

A Neuroblastoma Adjustment

It may come as a significant surprise to many to learn that I have left the CNCF. I have resigned from the board and I am no longer affiliated with them in any way. (Are you in shock yet?) I did so a few months ago, but chose not to say anything in my diary until we were farther along in discussions. I’m still not sure how those discussions will end, but we are at a point where staying silent is no longer the right path. So, why the break you may ask? I no longer felt that the direction the CNCF was heading was in our children’s best interest, nor the best interest of meaningful and purposeful research. After years of trying to create substantial change it became evident that I would never be able to accomplish it there. In the end, our priorities were very different and I will no longer be supporting the foundation.

So, I left.

Keeping my mouth shut has not been an easy task. Then again, I know that you know that about me. It has taken a noble, herculean effort as I have wanted nothing more than to shout from the rooftops. However, I also had to ensure that the children and families did not lose as a result of my departure. It is for this reason that I remained silent for as long as it seemed prudent.

I am a pretty simple and straight forward guy. Nothing much has changed since my entry into the world of neuroblastoma. I detest the disease and I want it wiped off of the face of the earth. I don’t want another family to have to face this monster and I certainly don’t want another baby girl or boy to have to walk in Sydney’s footsteps. No one, not even our greatest enemies, should have to endure it. It is this fear and the appreciation of this reality that drives me. It is not a choice. It must change.

To make a difference is not that hard. It is just two simple steps.

First, as everyone knows, is research. I want to fund the research that is meaningful - research that will make a significant difference in the lives of children with neuroblastoma. While I understand how crucially important it is to fund research that increases the overall knowledge of neuroblastoma, I believe it is even more important to fund research that has a clear path to impacting lives. I want to fund research that will save children. Period. In this same line of thinking, I have always wanted to fund research in a way that ensured that every single penny was making a difference. I have always wanted to create a way for friends and families to donate which would ensure that 100% of the funds donated would be utilized for research - not for administrative expenses, not for marketing, not for other programs or initiatives and not for anything else.

Secondly, after six years of living in this world, I know the importance of the simple act of helping other families understand their child's treatment options and issues. Neuroblastoma is a tricky subject for even the most knowledgeable of oncologists, much less a family of a child with neuroblastoma and no medical training. I think it is incredibly important for parents to have a place that they can go to get accurate, unbiased information and a thorough understanding of all of the important issues – many of which that aren’t even fully understood by many of the experts - a place where they can not only talk to other families that have walked down a similar path but can also find the world's leading medical expert for any neuroblastoma related issue imaginable. I want a place where families can get the truly unbiased and meaningful answers. You would be surprised at the number of institutions across North America in major cities in which children with neuroblastoma are still being treated contrary to what the world's experts believe. Many, in America, are still being treated in the dark ages. Knowledge is a simple way to make a difference and a truly inexpensive way to save lives.

See, these needs are simple and yet incredibly powerful. Unfortunately, to this date, they are also two needs that are yet to be truly and honestly fulfilled. It is for this reason that I, along with a few other families and business leaders have started a foundation with these specific goals in mind. We have started The Neuroblastoma Foundation - a place where you these two goals reign supreme. First, you can go there to fund research. If it is important to you to ensure that every dollar you donate goes to fund meaningful neuroblastoma research, then you can rest assured that 100% of your funds will make it into the hands of those researchers that need it most. Secondly, if you have a question about neuroblastoma it is a place for you to go to get answers. We are in the process of building a library of neuroblastoma related information. Additionally, we will offer monthly seminars, educational videos and weekly articles regarding everything you ever wanted to know about neuroblastoma. The website is still a work in progress but you are more than welcome to visit. More information is being added every day. The website is Let me know what you think.

You see, it is not that complicated to create change.

Now, I can make a difference.

This is purpose.

Lunch for Life? Good question. That is a discussion left all unto itself. For that, we will have to wait until tomorrow.

1 comment:

Anonymous said...

May this be a total success. The new site looks nice. Well done!

Paul Filippone