I stated a while ago that I volunteered to be the state advocacy chair for the CF Foundation here in Cincinnati. It doesn't require much work at all - reading an occasional email about things going on in government that could affect the CF world in some way or another, a quarterly conference call, a note to my legislators or representatives when there is a hot issue being debated or voted on. Well, I got an email today. Here's what it said:
"Dear CF Advocates,
We need your help! The latest budget proposals being debated by Congress would dramatically cut crucial funding for the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). These agencies play a key role in our effort to research and approve new CF Therapies. We need to keep the pressure on Congress to prevent these cuts!
Please send a message to your Members of Congress opposing these cuts.
If the FDA faces heavy budget cuts, it will take much longer to move promising potential therapies like VX-770 into the hands of patients. That is added time that many CF patients and people with other diseases cannot afford.
Similarly, the NIH performs crucial CF research. They are currently creating a new center to help develop scientific discoveries into new medicines.
If the NIH faces significant budget cuts, these breakthroughs may never reach people with CF and other diseases. These potential cuts jeopardize our goal of finding a cure for CF.
Please click here to send a pre-written message to your Members of Congress opposing these cuts.
Thanks for all you do!"
I'm asking all of you to be my advocates. I'm asking everyone reading this- people who obviously care about CF in some capacity, be it for Drew, their own children, family members or friends - to click on the link and send a letter to congress. The link will automatically draft a letter to your legislators, you don't have to find them or even know who they are. There is a form letter included. You can personalize it, or you can send it as is. It takes less than 2 minutes to do the whole thing. It's our letters to these decision makers that make the difference. They are representing us, and they need to know what's important to us. This is important to me, to us. And the more people who do this, the more the message will be heard.
Finally, on the advocacy note, I need a few people who I can rely on to help me with this stuff. We need advocates in all states as this is an important issue nationally, but I need a few people from Ohio who will be able to do simple things like this with me when they come up. As a CF parent, I love getting the latest news and information firsthand before some of the issues are even voted on, and being able to voice my thoughts and opinion on them on behalf of my son. Will anybody reading this advocate with me? When people ask me what they can do to help, this is what I want, this is what you can do to help me.
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