Wednesday, July 30, 2008

Neuroblastoma in Overdrive

Wow, is this a busy time in the world of neuroblastoma! I don't know where to start or finish. I could sit here and do nothing but simply list the neuroblastoma-ish stuff going on and I am pretty sure it would be the longest entry I have ever written. No wonder I never get a chance to go into the level of detail that I would on any one subject. So, here is a two parter.

First part! These are my nerdy little twerps. For some reason the other day, they decided to dig out some old life jackets and put them on. The only difference was that they decided to wear them as diapers. They spent well over an hour floating around giggling in their make shift diapers. They giggled endlessly. They could not get over how funny they thought they were. I have to admit. I got a good chuckle myself. I hope you do to.

It has been awhile since we have had a good picture of the hairless Dudester. His hair has grown back in a bit more since this picture of him was taken a few weeks ago but I just could not resist. Here he is - the dapper dudely.

So,what is going on in the neuroblastoma world. Well, for one, President Bush signed the Caroline Pryce Walker Conquer Childhood Cancer Act yesterday. This means it is official. The legislation authorizes $150 million over five years for pediatric cancer research and outreach, and reaffirms our nation's commitment to eradicating the number one cause of death by disease for children. You can read more about it here:
It is great news! However, the battle is not yet over. We still have to fight for the dollars to be appropriated. The next step is at the Defense Appropriations Subcommittee. Just because they passed the legislation does not mean we will get the dollars and, unfortunately, that is the tough part. Now the real work begins. You will be hearing more about these efforts in the days and weeks to come. We will need to write members of this subcommittee to urge them to prioritize childhood cancer funding or this will all be for not. I will provide more information in the coming days and weeks.
For those of you that love country music a generous donor is offering an autographed guitar on eBay. The auction only has one day left. The sale will benefit the research initiatives of the Children's Neuroblastoma Cancer Foundation. More information can be found below. Please stop by and bid.
This weekend in Graham, Texas they will be have a rodeo and day of festivities to benefit the CNCF. You can bet that I will have my boots on. There are a ton of festivities planned. If you are looking for a good time it is the perfect way to entertain the family this weekend. I hope to see you there. More information can be found at:
You know what? I could go on. This is just two of the things that are going on at this minute. We also have an art auction in California. I am working on a really cool liposomal formulation of irinotecan. Yes, me! Isn't that totally cool? We are getting ready for scans next week. I am helping to put together a local neuroblastoma symposium. I am trying to find sponsors for the art gallery showing of "Life. Through the eyes of a child living with neuroblastoma."
The list goes on.
My purpose is full speed ahead.

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