Tuesday, July 26, 2011

Make Every Breath Count

Several months ago, I agreed to be the State Advocacy Chair for the CF Foundation here in Cincinnati. I haven't had many people agree to advocate with me, which is disappointing considering how little work it requires and how much of a difference you can make. Here is a link to what we as advocates are asked to do. If you are reading this and interested in helping me make a difference, shoot me a email, or click on THIS LINK to get signed up to receive advocacy email from the CF Foundation.

The CF Foundation just launched their yearly "Make Every Breath Count" campaign, were we, as advocates, agree to meet with our members of congress while they are home from Washington on break later this summer and fall to discuss the Cystic Fibrosis Foundations Policy Agenda. We need your help to ensure we have the support in Congress to continue vital CF research, make sure new therapies are approved quickly and safely, and guarantee that everyone with CF has access to the care they need to live. It doesn't matter where you live - there are senators and congresspeople everywhere that need to hear from us about the importance of making decisions that will affect the care of our children.

Here are a few links to some of the information that we will be discussing at the meeting that I am hoping to set up with some of my decision makers later this month. Some of these are specific to the state of Ohio, but you can find information on your state by clicking HERE.

Cystic Fibrosis Facts: The Cystic Fibrosis Foundation’s Policy Agenda
What CF is and how the disease affects people in your state

Cystic Fibrosis Treatments: From Bench to Bedside
Why the National Institutes of Health (NIH) and Food and Drug Administration (FDA) are important to people with CF

Medicaid & Medicare Provide Essential Protections for People with Cystic Fibrosis
Explains the need to protect the Medicaid and Medicare programs that nearly half of all Americans with CF depend on for their care

CF Drug Development Pipeline
Demonstrates the progress being made in the search for new treatments and a cure

I hope that you can find a few minutes in your day to help out with advocacy. For everyone who ever has asked me, "How can I help?", this is how.

One final note, great news out of Pennsylvania today, where the University of Pennsylvania received $10 Million to create a center for Orphan Disease research and therapy. If you all know me, my favorite line is "CF is an ORPHAN disease so it receives no federal funding". Now there will be an institute dedicated to the research and therapy of CF and the other 7,000 diseases that aren't supported by our government. These diseases, while many, only affect about 200,000 people, apparently not enough for the government to care about. Your advocacy can help to change that!

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