February 15, 2009

Stimulus Bill

Diffuse Intrinsic Pontine Glioma

post deleted ...

February 11, 2009

Show me the money?

Diffuse Intrinsic Pontine Glioma (DIPG)

As a DIPG is so fatal, I wanted to find out just how much money is going to research for finding a cure. I have yet to pindown and exact number for diffuse intrinsic pontine glioma but as I go through last years budget to NIH... look at this...

first, I go to http://report.nih.gov/rcdc/categories/ which carries the budget that was alloted for NIH in 08. As I scroll through, categories like ... Estrogen, catch my eye. Got to see what is alloted for as that gets 245 mil vs the 194 mil for brain cancer. As there are over 120 different types of brain tumors, I need to divide 194 by 120... As my better half would say... do-de-do... carry the three....scratch... naw, that can't be right... redo... son-of-a-gun... 1.61 mil per tumor (on average). So, if it is completely and evenly divided, 1.61 mil a year for DIPG research

do-de-do... hmmm... let's see... lots and lots of projects.... what is this sex, sex steriods and dry eye syndromes??? Wow, $624,219! A third of what DIPG may get??? Got to be important.... search dry eye syndromes.... do-de-do....

Dry eye's prevalence increases with age, and is extremely common in older people. The condition affects two to three times more women than men. About six million women and three million men in the U.S. have moderate or severe symptoms of the disease, and scientists estimate that an additional 20 to 30 million people in this country have mild cases of dry eye.
What is the impact of dry eye?
Dry eye syndrome is not a frequent cause of blindness; however, it is still an important public health problem. In fact, visits for dry eye syndrome are one of the leading reasons for patients to seek eye care. This is because its symptoms are very bothersome and lead to a decreased quality of life, reduced work capacity, and poorer psychological health. Dry eye syndrome is associated with a decreased ability to perform activities that require visual attention, such as reading and driving a car. http://www.schepens.harvard.edu/about_the_eye_and_eye_disorders/dry_eye.html

excuse me??? I can see how that can be an inconvienance and should definately be researched but unless I am missing something, no where does it state it to be life threatening or life ending.

Naw! search sex steriods... hmmm... Sex steroids are a subset of sex hormones that produce sex differences or support reproduction. They include androgens, estrogens, and progestagens.

Okay... where is the life threatening part???

Nope. No way. Not even going to try and web search "sex".

Gosh and golly, can't wait to see what else are tax money is funding...

February 10, 2009

What is a Diffuse Intrinsic Pontine Glioma?

Diffuse Intrinsic Pontine Glioma (DIPG)

As some find this blog, one may wonder... What is a Diffuse Intrinsic Pontine Glioma (DIPG) and why is this guy so adamant about it?
Well, a DIPG is a brain tumor. It is deadly and there is no known cause or cure. Said that yesterday, didn't I? Don't be surprised if you hear again.

In a medical posting from ~ http://www.uptodate.com/patients/content/topic.do?topicKey=~.mRcz8tSL28gkJ

~ Gliomas arising in the brainstem (midbrain, pons, and medulla oblongata) account for 10 to 20 percent of all central nervous system (CNS) tumors in children. They are more common in children than adults. In the United States, for example, there are approximately 300 pediatric cases and 100 adult cases reported each year. In children, the median age at diagnosis is five to nine years of age, and the incidence is approximately equal between males and females.
Although previously thought to represent a single entity, brainstem gliomas are characterized by heterogeneous biologic behavior, ranging from low-grade tumors needing little treatment to those that are universally fatal despite aggressive therapy. Prognosis and treatment depend not only on histologic features but also on tumor location within the brainstem.

Approximately 80 percent of pediatric brainstem gliomas arise within the pons, while the remaining 20 percent of lesions occur within the medulla, midbrain, and cervicomedullary junction. The majority of pontine tumors are diffuse intrinsic brainstem gliomas, which are most often high-grade, locally infiltrative, and have a uniformly poor prognosis. Histologically, these tumors are either anaplastic astrocytomas (World Health Organization [WHO] grade III) or glioblastoma multiforme (WHO grade IV).

Alrighty, that's a medical definition.

Coming from a parent of a child that passed from a DIPG...

It is the ugliest thing one can imagine. This tumor does not care what sex the child is, what ethnic background the child comes from nor is it kind. Approx 85% of children will pass within 12-18 months of diagnosis of a DIPG and 98% within two years of diagnosis. I have not heard of a child living more than five years. It is a killer of innocent children and it needs to be stopped. More information can be found and researched to the right of this article with the foundations listed. I also ask that you take the time to check out the "other kids" and "lifted up". There you will find many, many, many children's stories.

February 9, 2009

First Blog

Diffuse Intrinsic Pontine Glioma

First time blog. Man, am I behind the times...

I'll tell ya folks, I have gotten to the point that it just hurts. Children are being diagnosed daily with a DIPG and yet it seems very little is being done about it. This cancer strikes between 150-200 kids a year in the United States and has no known cause and no known cure. It usually effects children in their first decade of life and on average, a child can expect to survive no more than two years from diagnosis.

What is being done about it? Very little. The government does not allocate near enough money to research. There are some groups/foundations out there that are trying to make a difference, that are trying to help families. Most have been started by people where their children were directly affected by this ugly monster. Sadly, it is not even close. We need a major shift in awareness!

I will be touching on many subjects in the coming months. Most of the posts will be in support of other foundations and legislative issues but I will also state my observations as I see them.

It is my goal to bring an awareness to the public for the children that rivals the Susan B Komen Foundation. I desire to help and assist families of children with a DIPG that may find this blog.
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