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Stop what you’re doing now and call your Senator!

The importance of funding for the National Institutes of Health is a no brainer for those of us with the Hermansky-Pudlak Syndrome type of albinism. Were it not for an institution like NIH, there would likely be very little known about HPS and there likely would be no clinical trials investigating better treatments and searching for the cure.

HPS is rare. Very rare. It’s hardly the sort of disease that’s going to make a pharmaceutical company zillions.

We HPS’ers, in general, aren’t exactly teeming with lots of extra cash of our own to fund HPS research. If we had to wait until the HPS community could raise a few million dollars to fund research, we’d still be waiting.

It’s the unique position that NIH has as a government agency that makes our research possible. NIH isn’t interested in profits. They’re interested in cures. They’re interested in research that can make life better, not only for people with ultra rare disorders like ours, but they’re interested in what they can learn from us to help treat millions.

But, the last four years haven’t been kind to funding for biomedical research. It’s not just hurting HPS. It’s hurting all kinds of Americans with all sorts of health challenges.

Senators Harkin (D-IA) and Specter (R-PA) have introduced an amendment to the 2008 Budget Resolution that would add $3.5 billion to the NIH budget. That’s less than we’re spending in a single month for the war in Iraq.

It seems, as best as I can tell from the Senate Web site, that the vote didn’t come up this evening. So, you could still call your senators in the morning. The Senate switchboard number is: (202) 224-3121. Ask your state’s senators to support this important measure. When you call, ask for the Health Legislative Assistant and explain to them why NIH is so important to us! You can also look up your state’s senators’ contact info at
www.senate.gov.

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