Children's cancer funding is being threatened by Bush

By: miller
Published On: 2/20/2007 5:38:54 PM

My 17 year old son was diagnosed with neuroblastoma a rare childhood cancer at age 15.  We left Virginia and moved into the Ronald McDonald house in New York City to participate in a clinical trial that has brought him to remission. We are here right now, coming once a month, for a week to participate in a phase two trial using an antibody therapy.  He has been in remission almost a year.  Unheard of in the normal protocol world.  If Bush has his way the funding for these rare, already underfunded trials will be in serious trouble.  I have never blogged here before but am desperate for people to send emails. I have two ways to do that through links.

Our personal website to read up on Nick is available here.

*To write through preset links...

To write a formed letter under "making a difference"...

And, you can also watch this video link:

There is no outrage like having a lifesaving treatment being threatened to be taken away from your child!!!! Here are some points to make-
1. Saving our own children in our own country requires funding for "out of the box" therapies.  This should never be at the forefront of a way to "trim" our budget.

2.Last year the director of the NCI (National Cancer Institute), Andrew von Eschenbach, set an ambitious but realistic goal of eliminating cancer deaths and suffering by 2015. Given exponential growth in discoveries, knowledge and treatment of cancer over the last ten years this goal is very achievable but the funding has to be there.

3.The war in Iraq has cost us $367,310,000,000 so far. One day (actually fifteen hours) in Iraq costing us more than the president wants to invest in cancer research for the entire year. 10 minutes in Iraq is costing us more than what he wants to spend on Neuroblastoma research

Comments



Miller (Kathy Gerber - 2/20/2007 10:07:13 PM)
Thanks for bringing this to our attention. Are there specific talking points or a form email we can work with?

Best of luck to Nick and your family! It sounds like a grueling process, but great news.



Thanks for the support talking points: (miller - 2/21/2007 2:53:03 PM)
One link gives a formed letter.  The other is for your own email.  The points that need to be made are:

1. Saving our own children in our own country requires funding for "out of the box" therapies.  This should never be at the forefront of a way to "trim" our budget.

2.Last year the director of the NCI (National Cancer Institute), Andrew von Eschenbach, set an ambitious but realistic goal of eliminating cancer deaths and suffering by 2015. Given exponential growth in discoveries, knowledge and treatment of cancer over the last ten years this goal is very achievable but the funding has to be there.

3.The war in Iraq has cost us $367,310,000,000 so far. One day (actually fifteen hours) in Iraq costing us more than the president wants to invest in cancer research for the entire year. 10 minutes in Iraq is costing us more than what he wants to spend on Neuroblastoma research.



Thanks for the support talking points: (miller - 2/21/2007 2:53:05 PM)
One link gives a formed letter.  The other is for your own email.  The points that need to be made are:

1. Saving our own children in our own country requires funding for "out of the box" therapies.  This should never be at the forefront of a way to "trim" our budget.

2.Last year the director of the NCI (National Cancer Institute), Andrew von Eschenbach, set an ambitious but realistic goal of eliminating cancer deaths and suffering by 2015. Given exponential growth in discoveries, knowledge and treatment of cancer over the last ten years this goal is very achievable but the funding has to be there.

3.The war in Iraq has cost us $367,310,000,000 so far. One day (actually fifteen hours) in Iraq costing us more than the president wants to invest in cancer research for the entire year. 10 minutes in Iraq is costing us more than what he wants to spend on Neuroblastoma research.



Thank You For Making People Aware of This (Alicia - 2/20/2007 10:42:59 PM)
I will write letters/emails -- and cannot imagine how difficult it must be for your child to have a life threatening disease -- and to have the fear that something would get in the way of making him better.

I wish you and your family strength - and continued good news.



PS - I looked at your website (Alicia - 2/20/2007 10:46:21 PM)
You have a beautiful family!


More Research Not LESS! (j - 2/20/2007 10:48:36 PM)
With trials like this showing such potential it is unconscionable that Bush is proposing less funding instead of MORE!
We need to take full advantage of new treatments, new medications, clinical trials, stem cell research and whatever else can help us make further medical advances in order to help 17 yr. olds and others who suffer life-threatening illnesses. 
I will be writing my legislators many emails about this and hope others will join me.
j


Know people care (samj - 2/21/2007 5:27:30 PM)
As always the current adminstration makes me wonder how they live with themselves. No one is safe from their interference.
I am so sorry that your family is going through this life crisis.  I will write my legislators regarding this decrease in funding and ask them to please find their humanity. I cannot imagine what it is like for you. Please know that there are people out here in the real world who care and will try to help in some small way.