http://www.dailyrecord.co.uk/news/scottish-news/cystic-fibrosis-girl-maisie-gets-1594768
Read about little Maisie who is on her first few days of Kalydeco, those feelings of wondering what all the signs in your body may or may not mean are all so fresh this story brought me to tears. I am so so happy to see more countries realizing what this drug really means to so many of us.
It is only because of fundraising that so many of you are SO involved in that this drug ever made it to patients and through the rigourous trials and approval process. The CF foundation co-funds the research that would never otherwise have occurred.
This is SUCH an exciting time and there is so much research going into getting this sort of drug developed for the other 96% of CF patients. I can't explain how excited I am to be a part of just one small piece of that research to extend the use of Kalydeco to more CF'ers. It is easy to get wrapped up in the day to day "doing" and the month to month travel schedule and forget what it is all an actual part of!
