So I fucked up. I forgot to do an f/u response paper to my presentation that I did three weeks ago. It didn’t have to be too long, but I needed to answer four questions. It isn’t a huge percentage of my grade but still. I remembered and then I forgot. My professor emailed me […]
Monthly Archives: October 2019
TRIKAFTA
FDA approves new cell corrector medication – TRIKAFTA. I have two copies of the F508del mutation – the most common mutation. This is not a “cure” but, and a big BUT – this one medication has the potential to help 90% of the population. Let us hope! Vertex Pharmaceuticals is making more dreams possible. Exciting […]
Locomotion
I have been writing a lot this week, so I think my mind is slightly fried from putting words together – but here I am writing again. So, take note as you go forward, some of my sentences could be frayed. I feel like there has been a lot of motion of with my health […]
To story tell
Storytelling and the need to story tell. Not stories that are written from someone else, but your stories. I am not talking about stories about that one time you can’t remember what truly happened, but stories. People are reading and writing more than anytime in human history, but they aren’t really saying a whole hell […]
Next generation
I started a new cell corrector med. It is the next generation from my last one. New one named Symdeko, old one – and a good nugget as it has treated me so well, Orkambi. It is not the trifecta that is probably going to come out later this year or early next. I actually […]
Write your life
I have this belief that you can write your life – what you put down becomes true. We know this when we say things – so really not that different if you write it. Because of this belief – I sometimes avoid saying or writing down those real numbers, to not give it weight. Instead, […]