Join the World Community Grid to Unlock the Mysteries of NB

Hi,
Just for a quick update - we are off to a not-so-hot spring break start, but we are hoping it's improving soon! Saturday was nice but cold and rainy here, and then Sunday everyone sort of fell apart around here. Elle got sick enough with a fever, and even some vomiting, to miss out on a birthday party. Hans SUDDENLY started displaying significant side effects from the ABT 751. Specifically, he didn't sleep at all Saturday night, he had that rough glazed over eye look, he was complaining of leg pain (neuropathy), he couldn't eat and he did get sick once. We were terrified that the ABT 751 was starting to get to him (and yes - the greatest fear is then that'd we have to take him off of it), but then he was better yesterday and today.

He slept well and has been able to eat and keep things down. He has had bike rides and a park playdate today. So - let's hope he can continue to handle ABT 751. Also, he went in for counts yesterday. His Potassium was better at 4.0. But, his Sodium was lower at 130! So, we got bounced back to Endocrine for advisement. I am just not as smooth at working the Endocrine system as I am now at the Oncology System - so we are waiting for a consult to see what if anything they'll do about the Sodium??? Meanwhile Elle was on the mend yesterday and today - but just got sick AGAIN! We feel like we are running a hospital around here.

Oh - I wanted to share something with you - you can sign up to be a part of the World Community Grid I am cutting an pasting, below, an email I recieved thru the NB Listserv about this very cool "space aged" project to help you solve the problems of NB.
Hello All,
I am forwarding an email I received through LISTSERV. Please, take a close look and see if you can enroll your computer to work as part of a network that tries to match around 3 million drugs that could influence several proteins found in NB.

It is as easy as signing-up, downloading a piece of software, and leaving your computer doing the job during the night (or any unused time). Please, visit http://www.worldcommunitygrid.org to learn more. There are many causes using this approach, please check the one associated with Childhood Cancer that directly aims for solutions related to NB https://secure.worldcommunitygrid.org/projects_showcase/hfcc/viewHfccMain.do

The installed software will tell the main computer that it is idle (while you are sleeping or not using it) and then it will be assigned a job. In simple words, when you are not using your machine for an x number of minutes, it will tell the main computer "hey, I am sitting here doing nothing, do you have something for me to help you with?", the main computer will send it a small job to perform and your machine will run it and provide the results.

The impact of enrolling your computer is high, one super-computer could take up to 8,000 years to match those 3 million drugs and see how they impact those proteins. If enough people enroll, time could be cut down to two, yes only two years!!!

It is very encouraging, but as you know it is still incredibly slow when time to set up clinical trials is added and contrasted against survival rates for NB. In consequence I would like you to join the cause and try to enroll as many people as possible, your family, co-workers, friends, neighbors, anyone! How many of us leave the PC on during the nights? It consumes barely any energy and it will be helping to find new treatments.



Okay - I signed us up today and as of right now, my first project is 46.9% complete -according to my desktop. I thought it was worth passing on. I might just send it out to a bunch of my contacts via email and facebook???

Lara