Wednesday, July 13, 2011

Town hall meeting

I went to a CF event tonight that Martin was actually able to attend as well. I will admit, it wasn't exactly what I was expecting, but I'm not really sure what I was expecting. Maybe I should have read down a little farther on the email, but all that I saw were words like "town hall" and "research updates" and "Dr. Clancy" (who you may remember from this post). I will attend any and every CF event that I can to get every bit of information or update or support that anyone is offering. I want to understand all that I can understand, and know everyone I can know.

After a few introductions, Dr. Clancy gave us the "quick and dirty" history of himself and his involvement with CF. It comes off as a passion, really. You get giddy with excitement for him when he talks about the research that he's been a part of and how much hope there is for a cure. I saw him speak at the Thomas Boat Research Symposium a few months back, and while it was a little on the clinical side, it was still awe inspiring. When I think about Drew's future, I can't not imagine him as a part of it. He might be the very reason Drew has a future.

While he was giving his little talk, he mentioned that he would be happy to help out the foundation and the families in any way that he could. My mind lit up. There is an event that the CF Foundation runs called Make Every Breath Count, where advocates meet with their local decision makers (senators, congressmen and women, etc.) to let them know how valuable their support is in the vital programs that affect those with Cystic Fibrosis. In the State Advocacy position that I volunteered with a few months ago, we already do a fair bit of emailing and calling these state representatives about current events and issues that affect the CF community, but the Make Every Breath Count event this year is shooting for face to face meetings. I get it. Being in front of someone has far more impact on a number of levels, and I'm hoping that we can rally some government support.

So back to Dr. Clancy. At the end of his introduction, he mentioned that he was here to help, so I jumped on it. I mean, if there is 1 guy who is going to make a difference and seriously knows his shit about CF, this is him. I introduced myself and told him about Drew. Everyone always already seems to know or have heard about Drew, what with all the extras that came along with his CF. All things told, he's doing great. I digress. I introduced myself to Dr. Clancy and told him about my involvement with the Make Every Breath Count event and he said he would be happy to help! Winning! I gave him my card and he jotted down his email address and # for me. I am seriously so excited about this. Our "friendship" will meet it's demise when I bombard him with emails and phone calls of questions to the point where he asks to move to a new hospital. Just kidding, I'll stick to Dr. Burns for that for now. I think she takes some of my questions to him anyway.

So, high on that success, we jump right in to the purpose of the meeting, which turned out to be essentially recruitment for upcoming events. Maybe recruitment isn't exactly the right word, but events and goals for events were discussed and volunteer needs were highlighted. It was a good meeting, full of brainstorming ideas and excitement about big events. But when I looked around, there were probably only 20 people there, 25 max. Four of them worked for the foundation. Three of the people at my table had no direct connection to CF and were just involved for purposes of philanthropy I guess. I saw one other CF family I recognized, and one CF patient. Hello?! Where was everyone? Why aren't all CF families at these things, rallying support, showing support? I just don't get it! The very second that Drew was diagnosed with CF, I was in this 110%. If that means annoying my friends and family with emails knowing (or hoping) that they will support me when they can but will otherwise not care, I'll do it! If I have to lug my kids all around town asking for donations for the different events, consider it done. It's a pain, I get it. But what's worse is seeing your kid struggle to catch his breath running around in the playroom, or fighting with you because he wants to play with his twin sister but instead has to sit hooked up to a breathing machine and a Vest to make sure his lungs stay healthy. That sucks. And if the parents and families and friends who see this reality and live this reality aren't supporting the foundation, then who will? The government doesn't. Maybe after my Make Every Breath Count meeting with Dr. Clancy on my side they will :)

I hope everyone who reads this can just catch a glimpse of my passion. Know that I'm really not as annoying as I may come off asking you to participate in or support my event all of the time. I know not everyone can do everything i ask, but if I don't ask i'll never know. I'd rather have you say no to me then to pass on the possibility of a yes.

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