Announced last week, phase 2a of trials for a new drug to improve the underlying cause of Cystic Fibrosis has gone well. It was tested on people with the G551D mutation, one of the less common mutations, and not one that Camden has. However, it looks like the next round of the trail will be for people with his mutation, R117H, which is also one of the rarer mutations. This is the first time a drug has been successful at treating the abnormal sweat chloride, the cause of CF, rather than just the symptoms. It seems that it could be a turning point toward a cure! Going up against a disease like this can make you feel hopeless and isolated at times, but we are so fortunate that there are organizations like the CF Foundation doing this kind of drug research. They really seem to have it together, I even got a call from the guy heading up the Great Strides walk. Since we're a new team this year, he wanted to check in and meet up for coffee, see if we had questions, etc. It's good to know people like that are pulling for us. You can read more about the trial
here.
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| Before walk | After walk |
In other news, it was nice out here this weekend so we went out for walks both days in the stroller. Camden's pretty quiet and stares at everything, taking it all in. It's hard to tell if he's enjoying himself, but he was conked out by the time we got home today. He slept a lot after our walk yesterday and was super tired by bed time tonight, he slept through nebs, bd's, medication, vitamins and a change of clothes! I think the fresh air wears him out. Hopefully Spring will really come soon and we'll be able to get out every day. Here's some pics from today and some from last week when my parents were here. We've now made it through 3 baths now without screaming. Yay! He even has started stomping in the water when we hold him standing.
~Chelsey
Announced last week, phase 2a of trials for a new drug to improve the underlying cause of Cystic Fibrosis has gone well. It was tested on people with the G551D mutation, one of the less common mutations, and not one that Camden has. However, it looks like the next round of the trail will be for people with his mutation, R117H, which is also one of the rarer mutations. This is the first time a drug has been successful at treating the abnormal sweat chloride, the cause of CF, rather than just the symptoms. It seems that it could be a turning point toward a cure! Going up against a disease like this can make you feel hopeless and isolated at times, but we are so fortunate that there are organizations like the CF Foundation doing this kind of drug research. They really seem to have it together, I even got a call from the guy heading up the Great Strides walk. Since we're a new team this year, he wanted to check in and meet up for coffee, see if we had questions, etc. It's good to know people like that are pulling for us. You can read more about the trial here.
In other news, it was nice out here this weekend so we went out for walks both days in the stroller. Camden's pretty quiet and stares at everything, taking it all in. It's hard to tell if he's enjoying himself, but he was conked out by the time we got home today. He slept a lot after our walk yesterday and was super tired by bed time tonight, he slept through nebs, bd's, medication, vitamins and a change of clothes! I think the fresh air wears him out. Hopefully Spring will really come soon and we'll be able to get out every day. Here's some pics from today and some from last week when my parents were here. We've now made it through 3 baths now without screaming. Yay! He even has started stomping in the water when we hold him standing.
~Chelsey
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