The Advocacy Chair (AC) position is a volunteer role that can have a significant impact on the way CF issues are treated in Washington. The AC spearheads the Foundation’s efforts in each state by building relationships with targeted Congressional offices in order to increase support for the Foundation’s policy agenda. Essentially the main responsibilities of the Advocacy Chairs are:
- Participate in the quarterly Advocacy Chair conference call and keep up with the regular update emails sent by the Public Policy Department (the day after calls, we always send a full recap for those who aren’t able to make it along with a list of next steps).
- Follow up on the action items covered on the call/in the emails, which usually involves regularly meeting and otherwise communicating with Congressional offices about the Foundation’s current policy priorities.
- Recruit 5-10 Network Advocates (usually friends, family members, or others in the CF community) in the local area.
- Use the tools and information the Public Policy department provides in order to facilitate and direct the efforts of these Network Advocates to attend meetings, call andwrite Congressional offices, and otherwise support the efforts of the Advocacy Chair.
I think I can handle that. I have a conference call with the National Advocacy Chair next Thursday to learn a little bit more about what I'll be doing. We'll see how it works out!
The other thing I did after the conference [where I met so many wonderful and fascinating people] was to follow up with one of them. Specifically, Robert Beall, the President and CEO of the CF Foundation. I didn't have his email address, but it wasn't hard to figure out following the format of the others I know who work for the same place. I just wanted to re-introduce myself, say "Thank You!" and let him know that if there is ever anything that I can do to help to please let me know. Well guess what? He wrote back! I'm telling you, these people in the CF world are like none other. They aren't just doctors and nurses and researchers and business men and women who go to work and do their job and go home and forget about you. They care. They truly care and are honestly working with you and for you. Bob (we're on a first name basis now) remembered the picture I showed him of Drew and my grandfather (his great grandfather) and he said that he appreciated the note and thanked me for doing all that I do for CF. Bob, you made my weekend.
I told Martin that I had emailed Bob and he compared me to the new intern who invites the CEO out to lunch. I got all defensive, saying that you never know when you're gonna need help from someone, and the big guy in charge is a good guy to have in your back pocket. Networking, in most walks of life, is key and its not different with CF. Martin then said that he had no problem with it, that intern becomes legendary. I'd like to be legendary!
Finally, the health update for the week. Even though this is only our second run on Tobi, Drew seems to get really noisy when hes on it. By noisy I mean sounds like hes got a major frog in his throat all the time. But that noisy, over the past few days, has slowly turned into lots of coughing and some difficulty breathing. I called the doctor and they're going to put him on steroids for a few days to try to get rid of some of his inflammation and hopefully allow him to clear whatever hes got going on without more antibiotics. If the Tobi irritates his airways even more than they're already naturally irritated by CF and then extra by the malacia, its seems for him to just reach a point where he gets into some distress. Hopefully the steroids will knock it out and we won't need something new.
That's all I've got for now! Hoping for a relaxing weekend.