Advocate With Me!

What is the role of the CF Advocate?
CF Advocates advance the Foundation’s public policy agenda by telling their personal CF stories and building relationships with their elected officials.

Can I really make a difference?
Yes! Here are just of some of the extraordinary accomplishments that CF Advocacy efforts have led to in the last year:
-Passed the “Improving Access to Clinical Act” into law, which will allow people with CF to participate in important clinical research without losing their public health coverage.
-Helped ensure that programs which people with CF rely on for their care are kept active and well-funded in states such as Florida, Louisiana, Missouri, North Carolina, New York, and Wisconsin.
-Secured critical provisions in the health care reform law to help people with CF.

What exactly would I be doing as a CF Advocate?
We’ll give you the tools, including tip sheets, e-mail templates, and even over-the-phone training sessions, to help you tell your story and successfully engage with your members of Congress.

1. Provide your  full name, home address, and email address to your State Advocacy Chair – that's me! (email me at

2. Sign up to receive the CF Advocacy Newsletter (which will allow you to take action on key CF-related legislation as it develops) by registering at

I will email you regularly and ask you to contact our legislators on important decisions they are making that could effect us and our children. Most of these emails I will ask you to send are pre-drafted, asking that you only add your personalization to it. It truly would only take moments a month, and is so very very important to the welfare of people like Drew. I'm doing this for Drew and I hope you can find the same drive and determination and do it for your family or friends or do it for Drew with me or whoever you know whose life is affected by Cystic Fibrosis. 

o   Public Policy Agenda - the issues you will ask your Members of Congress to support fall into three categories: Research (to develop new drugs and improved care for people with CF), Access (to vital CF care and drugs), & Awareness (about CF, our mission, and our issues) - review this document and think about how your CF story can be tied into one or more of these issue areas.
o   Telling Your Story: A Powerful Advocacy Tool - whether you send an email or meet with your elected officials face-to-face, your story is what will ensure they remember you. When your story is compelling, it increases the chances of your elected officials taking a stand on the issues you care about. These tips can help you and the Advocates you recruit to make an impact.