Wednesday, October 8, 2008

Way too much!

Good morning! I would be lying if I did not tell you that I was still recovering. I know that sounds a bit ridiculous for attending a summit meeting between 9:00 AM and 4:00 PM. That is because it is and I have learned a very valuable lesson about flight planning. My major issue was my flight tp which arrived in Philadelphia well after midnight. To a normal person that may not make a big deal. But, we also mustn't forget. I am not normal. I wake up early. 1:00 AM and 2:00 AM are not late nights for me. Those are early mornings and it effectively made my body feel like I skipped a day. I have never slept worse. I was jet lagged by a 3 hour flight - absolutely ridiculous - and my 1 hour time change left me wondering whether it was still day or night - worse than absolutely ridiculous. For someone that travels as much as I, this really should not have been an issue.

The great news is that the Childhood Cancer Summit was great. I am always a bit curious going into situations like this. I am interested in understanding the perspectives and drives of other charities. The summit was made up of about 20 different childhood cancer charities and from what I understand there were almost 40 people in attendance. We represented a variety of childhood cancers but from my perspective neuroblastoma certainly had the biggest presence. Over half of the charities attending were started as a result of a child with neuroblastoma. The entire purpose of the meeting was to find ways for our organizations to work together to further our common cause. I am happy to report that it appeared that everyone in attendance shared this common goal. This was no little thing either. We are not talking about a room of stuffy suits that were all looking to serve their own interests. We are talking about a group of very passionate people with a genuine desire to create substantial global change. This group was heavily committed to making a splash and seemed to have no problem putting personal beliefs and views aside to help the common good. This is meaningful. There have been attempts by other organizations to do this type of thing in the past but it has always turned into a battle of the egos topped off with a shield of self protection and a sword of self interest - so much so that it seemed nothing real was ever getting done. There was no real collaboration. There was no real joint effort.

This was different!

I don't know exactly what the difference was but I can tell you that 95% of these people had a deep personal connection to childhood cancer which transcended the organization that they were affiliated with. I don't know how to say other than to say - they got it.. There is a commit to work together for the common good.

So, what does all of this mean?

Well, we started working. We brainstormed in every different area imaginable. We tried to identify all of the different ways we could work together towards our common goal of defeating childhood cancer. Before we got through the room we had already identified a list of ways that we could work together that was almost 6 pages long. We then divided this list into 4 common areas for discussion and began the process of identifying the "low hanging fruit" (the things we could do together right now) We also identified many of the items that would require further work and discussion to get consensus on.

As you might expect I was in on the research discussions. The ultimate question was "What can we do together to help hasten research. What are the issues? What are the goals? How do we help to speed up the process? How do we help reduce duplication? In the end, we identified about 6 items that we could move forward on right now.

By the end of the meeting we had a great list of actionable items that I think we can make progress on. We volunteered leaders in each of our functional areas to carry the torch to get things moving before our next meeting in the Spring. We have active committees and I am hopeful that we will truly see some substantive change in the coming months. Collectively, there is no doubt in my mind that this group can truly create change in childhood cancer.

It was an honor and a privilege to participate.

Finally, I am happy to tell you that my children all survived my absence. However, they are certainly worse for wear. Sydney is walking with a limp (I am obviously hoping for a bruised heel) and Ainsley is still a little bit funky. She is not technically sick. However, she is also not well. I can't really say what is going on other than to say that something is amiss. The whiny gauge tells me that something is wrong. She is still not herself and she doesn't look it.

Finally, we need prayers for two of our neuroblastoma families at Cook's. Both Ajla and Lexi received horrible news this week. Ajla's disease has taken off - almost literally exploded. Her liver is almost completely compromised by neuroblastoma and it seems that new tumors are growing rapidly in her skull. They have discussed putting her in a coma to help with the pain - which is intense. Her mother fears that she will not make it home again. It is a gut-wrenching, heart-tearing time for this family. Lexi's family found out her relapsed disease has progressed. They are now frantically searching for alternatives across the country. This is a tremendous burden on her single mother. It is another horribly sad and stressful time for many of our friends at Cook's. Need I mention how much I hate this damn disease.

Well today I must run. This morning I have a meeting to work our national awareness campaign, followed by a conference call with the NCI, and then finally this afternoon another conference call with the NANT. It will be a busy day.

No matter how busy I am my friends Ajla and Lexi will be in my heart, mind, and prayers.

They are all of our purpose.


AJay Piniewski said...

I am very interested in the results of the meeting. Can you provide me with some additional details? Is this the summit that Alexs lemonade and St Baldrick reps went to this week.

We'd love to have you over at PAC2....

themacdonnells said...

If there is anything I need to start doing with our foundaiton to help with what you all discussed in our meeting, let me know. I am all for doing whatever we can to make a huge change.