Reply #5: Looks like we've been down similar paths [View All]

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and I suppose that 35,000 families a year can say the same thing.

You'd think that with so many families there would be a powerful network of support for research and treatment, maybe with a coordinating agency, but I think the case is that it's just so devastating that most families turn inward and think (necessarily) of their own survival. Day by day.

I've looked for research about the causes and about surviving families, but it's all pretty thin and uncoordinated. I've even thought about trying to organize something like that myself, but as you know, sometimes you just have put it away for a while.

You hang in there.