Last week I blogged about some of the interesting papers I’d found on my latest troll through the medical papers (the ones I can get to anyway).
One thing I left out, mostly because it didn’t fit with the topic at hand, were the papers I found where the researchers are studying HPS, but not so much for HPS’s sake. Several of the researchers were using the protein trafficking problem of HPS as a model to study cancer cells that don’t respond to typical cancer therapies. The science, as usual, was a bit beyond my humble understanding. I suppose the researchers are trying to better understand why certain types of cancer are resistant to therapy.
There were several of these papers. In fact, last year a researcher from Germany studying cancer contacted the Network and asked if we could help him get some blood samples. After his research was looked at by some of our science folks, I volunteered some of my blood. If you could help a cancer researcher with a vile of blood, how could you refuse?
And who knows – even though they aren’t studying HPS exactly, as they work with their HPS mice etc, perhaps they’ll stumble upon another clue for the great mystery.
I bring this up for another reason too, however. There are those who don’t see the value in funding research on a rare disease like ours. They’d rather go after the big name diseases that they feel impact more people. The thing is, however, there are many times in history where studying a rare disease has yielded that magic clue to an ailment much more common. By ignoring disorders like ours, they could be overlooking that critical clue that could make all the difference.
One thing I left out, mostly because it didn’t fit with the topic at hand, were the papers I found where the researchers are studying HPS, but not so much for HPS’s sake. Several of the researchers were using the protein trafficking problem of HPS as a model to study cancer cells that don’t respond to typical cancer therapies. The science, as usual, was a bit beyond my humble understanding. I suppose the researchers are trying to better understand why certain types of cancer are resistant to therapy.
There were several of these papers. In fact, last year a researcher from Germany studying cancer contacted the Network and asked if we could help him get some blood samples. After his research was looked at by some of our science folks, I volunteered some of my blood. If you could help a cancer researcher with a vile of blood, how could you refuse?
And who knows – even though they aren’t studying HPS exactly, as they work with their HPS mice etc, perhaps they’ll stumble upon another clue for the great mystery.
I bring this up for another reason too, however. There are those who don’t see the value in funding research on a rare disease like ours. They’d rather go after the big name diseases that they feel impact more people. The thing is, however, there are many times in history where studying a rare disease has yielded that magic clue to an ailment much more common. By ignoring disorders like ours, they could be overlooking that critical clue that could make all the difference.
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