Wednesday, September 27, 2006

So, in 2003 Paul G Allen (co-founder of Microsoft) founded a research project to map the genes in the brain. It was called the Allen Institute for Brain Science and the project was soon dubbed "The Brain Atlas". It was financed by Allen himself, with $100 million in "seed money."

The project had some troubles along the way, floundered a bit for a while, but has recently been "completed."

Initially, in my research, I stopped around the point of the floundering, and was temporarily and secretly happy that it had, as the last site I visited stated, died. It isn't that I actually begrudge research into other medical areas, but obviously, I feel that the same amount of money and man hours should be being devoted to solving the mystery of congenital heart defects. To my knowledge, no one is (or ever has for that matter) sunk $100,000,000 into congenital heart defect research. There are dangerously few CHD research projects at all, and I say 'dangerously few' because babies and children are dying from a simple lack of knowledge.

$100 million is a LOT of money. The brain is obviously a very important component of the body, and understanding it will obviously benefit multitudes of people. I don't want those people to miss out on their cure, but I do want the 40,000 kids born every year to find their cure damn it. Put it in perspective with me ok? Four thousand babies every year are destined to die with in their first 2-3 years because there is so little research funding available. I've lost 2 babies in 5 years, and you've all been so compassionate and sympathetic; you've all been touched by the magnitude of that loss. But, 200,000 children have been born with a CHD and (other than mine) 19,998 babies have died in those 5 years.

Where's our $100,000,000?

posted by Erin @ 1:37 PM   0 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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