This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Hello. This giving Tuesday, I am asking for your help on one thing on behalf of my son Eli, who has a fatal disease called cystic fibrosis. It’s not cash. It’s time for a pair of phone calls. For giving Tuesday, please make a phone call to your senators on behalf of medically complex kids …

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Energy, it’s been awhile. I’d toootally forgotten what you look like. I’ve finally adjusted to Wellbutrin after an initial 14 days of extreme ups and downs. The vain me is relieved that a non-weight gaining stimulant appears to jive with my brain chemistry. I’m way less hungry, which is different, because one of my nicknames …

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Yes, as through this world I’ve wandered I’ve seen lots of funny men; Some will rob you with a six-gun, And some with a fountain pen. -Woody Guthrie If you, like me, are interested in getting a handle on the inner-workings of pharma, – the good and the bad – you’re going to want to …

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Eli earned a new nickname this week: Boss. He did the best he could to boss everyone in his world, everyone trying to mess with him. He is 38 pounds of piss and vinegar. He’s a boss. Want to take the piss out of him? (Literally)? Naw, he ain’t havin it. Need a drop of …

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My petition protesting the prices of the latest round of charity-funded cystic fibrosis medicines, Kalydeco and Orkambi, which wholesale in the $200/$300K per year range, now has 64,610 signatures. I”d really like to go for 100,000, the estimated number of people in the world with cystic fibrosis, according to the UK’s CF Trust. SIGN HERE …

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I went on a walk today at lunch. It included 40 device-free minutes. My mind wandered to exercise. Not my own efforts (or lack thereof in recent weeks) — my son’s. I found out about the Cystic Fibrosis Lifestyle Foundation via a contact on @thisiseli, our Twitter handle. Even better, I found this foundation will …

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Greetings! Nothing says ‘on a budget’ like a $2 12-pack of ramen. We’ve launched a renewed savings initiative that entails working to control grocery and supply costs. It’s a top-three household expense, and the only expense that isn’t fixed. It only made sense to pick up some ramen for the launch of our savings campaign. …

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