Monday, January 18, 2010

Maximizing neuroblastoma'a piece of the pie

After Friday's post I received a ton of email regarding what could be done to increase neuroblastoma's chance at getting its chunk of the change. For better or worse, that rests in the hands of our researchers. You see, the first great hurdle was getting neuroblastoma listed as a designated topic area. This is where your help is always needed. Each year every disease area is reselected. We have been lucky to be selected twice and this is undoubtedly related to Gavin's efforts. However, all of our voices count and this is something you want your Congressman to know is important to you. You may even want to write a thank you note to thank them for helping to ensure neuroblastoma was on the list - whether they had any part of it or not. Regardless, next year, when they are getting ready to make the selection again, I will do my best to let everyone know.

So, back to the original question, what can we do to make sure neuroblastoma gets a bigger piece of the pie?

Many of you know that I sat on thethe Department of Defense's Peer Reviewed Medical Research Program (PRMRP) Neuroblastoma Research Panel. There were about 30 of us - researchers, physicians, and advocates. Our job was to help score the scientific merit of the neuroblastoma research that had been submitted. All of the research was scored, summarized, and prepared for the next stage of evaluations. However, from a scientific perspective this was likely the last time in would be scrutinized. The next step was to evaluate the military impact of the research and this was completed by the military.

Yes, I said, military impact.

After all, this is the entire point of the Department of Defense. But, don't be to dismayed. There are many opportunities for neuroblastoma research to impact the military. While sure, there are parents of children with neuroblastoma in the military that is not the strongest argument. In evaluating research we also look for things that impact other diseases. In other words, I looked for research that had far reach. The fact of the matter is that at this level (not just DOD, but NCI and others as well.) they are putting resources behind research that has the largest impact. If we are going to succeed we have to show that we will not only impact our own little NB world but that we can do so for other cancers as well. It is these "requirements" that help to ensure that dollars are doing the most good.

You may not like the philosophy. In fact, you may think it is really unfair. But, this is the way that it works and when it comes down big governemental units that are ferreting out funds they are looking to fund that which effects the most people. After all, that is how their success is measured. If we want major league funding we have to fill the stadium with lives.

Thankfully, there is little research that only impacts neuroblastoma. We can always learn things that impact other cancers and diseases. The trick is showing that in the proposal As our researchers are going out for these big dollars we need to ensure that they are keeping this in mind. They need to show a large impact if they are going to have any hope of obtaining this funding.

And now I come back to where I started, it comes down to our researchers. The better they show how their neuroblastoma research is going to impact the rest of the world, the better chance they have at getting funded, and the better chance neuroblastoma has at getting its piece of the pie.

Of course, we all have to remember that I am just a dad with no formal medical training what-so-ever. Furthermore, I have absolutely no decision making power. I am not an official voice and I certainly have no right r permission to speak on behalf of any of these organizations.

Still... If I was going to send in a funding proposal you can bet that I would be sending in a proposal with the best of both worlds - the neuroblastoma one and the wide world of cancer one.

Most of the time, purpose in the real world requires a lot of give and take - and a little insight never hurts.

1 comment:

Anonymous said...

Hey Mark,
First let me start with, How are you? We are hanging in and taking one day at a time. Feb 3 will be one year that we lost Jenna. I am just really getting back on my feet and want to start getting back in the fight. All be it from a different perspective. I look at it now as going after a killer. Going after the thing that murdered my daughter. Seems fitting, and have you noticed how popular the theme is lately in the movies, Lovey Bone and Edge of Darkness.
The question I have is about your recent post. Are they accepting proposals or processinf and finalizing proposals they already have received. The reason I ask is that I think the work that Dr. Haber and his team at Massachusetts General may fit perfectly. Its using CTC chips to capture and then analyze circulating Tumor cells. I reached out to him a year or so ago about opening up a neuroblastoma trial but he was not interested. The dollar signs attached to this grant may cause him to rethink his decesion. What do you think?
Patrick Mussolini - Jenna's Dad