Thursday, May 21, 2009

Help Advocate For Cystic Fibrosis Research


You may remember my friend Emily (pictured above with me at the Great Strides walk last year), who I have mentioned before in my blog. You may also remember that she lives with Cystic Fibrosis. Well, you and anyone you know can help to advocate for continued CF research. Here's what the CF website says...

"Cystic Fibrosis Caucus Co-Chairs Representative Edward Markey (D-MA) and Cliff Stearns (R-FL) will soon introduce a bill to help more people with CF participate in clinical trials.

Right now, because of eligibility rules regarding compensation for clinical trial participation, many people with CF are forced to choose between taking part in important clinical trials and keeping their health care coverage.

To help promising drugs move swiftly from the research and testing phase to the people who need them, more people with cystic fibrosis are needed to participate in clinical trials. This important legislation will remove that barrier to allow more people to participate in clinical trials."

By going to this website , you can fill in your information and add a message to a pre-written letter which will be sent to your Congressman. The letter urges the Congressman to take action and to support the new measures that are coming up in Congress which relate to CF research. By taking just a few minutes and filling in your information and pressing "send", you are being a voice for CF and a voice that is saying that clinical trials for CF and other diseases need to be more easy to participate in. It will only take a few minutes, and by being a voice you may help to enable research to be done more easily and in the long run, you may help to save people's lives.

So please, just take a minute and do this. They're so close to a cure for CF. If you go to Nate's blog, you can read his view on this legislation and read his wife's story about living with CF. There are people all around the world who are waiting for a cure, and it's so close to coming. They just need to test the medicines...

So, please help!

-Jenn

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