What would you do if this were your child?

I wanted to write an update regarding the Magic Water Project (MWP) foundation that I and a couple of other cancer parents launched in June 2007.

First some background: our mission is to discover and fund innovative treatments for neuroblastoma and medulloblastoma that are less-toxic and more effective than present standard-of-care therapies.

The reasons for doing this are clear:

  • The cure rate for neuroblastoma has not improved significantly in the last 20 year (20 years!!!! – but hey, I can blog from my cell phone so as a society we’ve got our tech priorities in order).

  • The limited number of available treatments for neuroblastoma – in particular relapsed neuroblastoma – are highly toxic to such small bodies, and a significant percentage of the kids fighting neuroblastoma with these treatments die from the side effects. To illustrate this fact, Max has received over 20x the amount by volume – not adjusted for weight - of toxic agents that Lance Armstrong received for his testicular cancer.

  • There is a significant amount of research on cancer, but not much of it gets applied to neuroblastoma and medulloblastoma. Instead, market forces favor research dollars and effort being directed at large, adult populations of cancer – breast, lung, prostate.

  • There are thus opportunities to attempt to apply a large amount of the research findings from other cancers to neuroblastoma and medulloblastoma, with the goal of quickly determining efficacy against tumor cells in the lab using cell and animal models, then making the determination if a phase 1 trial makes sense.

  • If we do all of the above, and quickly, our goal is that we will SAVE OUR KID’S LIVES!

The MWP has started hosting a quarterly meeting – a group of parents, researchers and oncologists – to discuss, decide on, and fund treatments which we think may be effective against these aggressive cancers.

Our second quarterly meeting took place January 28 in NYC. The report of this meeting, and associated presentations by the attending researchers, is available at the MagicWater Project website via the link below. If the link doesn’t work, you can select the text and copy-and-paste into your browser.


Please take a look when you have a chance, and please forward this post to anyone you think would be interested in helping us to achieve our goal. We have open volunteer positions available, and need all the support and help – financial and volunteer – that we can get. Our spring meeting will be held in San Diego April 17th, immediately after the American Association of Cancer Researchers (AACR) annual meeting at the convention center in downtown. Anyone interested in helping us in any way is welcome to attend the spring MWP meeting, just email me for details.


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