On Friday afternoon, I had the opportunity to talk with Genentech, the makers of Pulmozyme and the people behind the website CF Living. They were looking for feedback on different projects and aspects of CF life. They shared with me some of the projects that they have done and are currently working on, and I told them all about the C3N project and the PIQI group that I'm a part of at Children's. We talked for about an hour, just about resources and things that I like and then other areas where I feel there may be a "miss" in terms of available or easy to find information. It was a really interesting call, and I think that being introduced to the CF Living website was the best part. I like that it has stories from families at different stages. I like that there is non-clinical information about CF - like "what CF means to me" kind of stuff instead of just numbers and facts. I hope that at some point we can contribute like that, because on videos and websites like CF Living you hear people that feel the same way that you do, that you can connect with and I hope that we can share our story so that other people can connect with us the same way. There's a sort of comfort in knowing that you're not alone.
Also, if you can make it through the ridiculously long intro and lengthy extra dosing information bits throught the video, there is a really nice little animated video on how your different breathing treatments work to keep your lungs healthy. You can check that out by clicking HERE. I'm going to keep digging around on these website and will post any other information that I find helpful.
A few weeks ago, I learned that the voice of The Count (Sesame Street) passed away. My kids walk around the house counting everything - 1 ah, ah, ah, ah, 2 ah, ah, ah, ah, etc etc - and singing 8 is Great, all thanks to The Count. What I did not know about The Count is that he had a daughter who had Cystic Fibrosis! And his ex-wife, the girls mother, wrote about about her life. I bought it on Amazon for $.01 (that's right, 1 cent) and I'm about halfway through. Its pretty easy to read and is interesting to see what life was like for someone born in the 60's. Christine passed away in 1982, before the CF gene was ever discovered.
Some might think it torturous to read about unhappy endings or watch documentaries on CF that don't always end the way that you would want them to, but I feel like recently I changed my way of thinking about CF. I'm not so afraid of it anymore. I still have my moments of fear and worry, but I'm trying my best to do everything that I can to make sure that our story ends differently. Again, I have my moments, but most of the time I just accept it as who we are. Who WE are, not who Drew is. CF is a part of what makes up our family, and we will all keep positive attitudes and keep moving forward as we search for the cure.
This weekend we have our biggest fundraiser, Oktoberfest: Drinking for Drew. My husband and one of our friends will be making sausage on Wednesday night (they've really gotten quite good at it!). On Saturday, our backyard will be transformed into a Biergarten full of home brewed beer made by some of our dear friends, food, and friends. Anyone and everyone is welcome. Its $25 and all if it will go to the CFF. If you're in or around Cincinnati on Saturday night, swing by!
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