Yesterday this box arrived via Fed Ex and I wanted you guys to know about it because it involves many of you! This is my first month’s worth of a brand new medication for treating Cystic Fibrosis – Orkambi. Throughout my life, many of you have prayed for my health (and my brother Mark’s) and given financially to CF research. I even participated in a Phase Two study for this med. So to be able to show you that it’s HERE is pretty fun!
In some ways this is just another new med, of which there have been a handful in my lifetime. We have been advised that the positive changes to our health will most likely be slight. But positive change is worth fighting for on any level, right?!
In other ways, this new med is different from any others. It is a pill (YAY, not another aerosol!), which I’m happy about! Also it is not an antibiotic or something that treats symptoms. It actually works against CF at the most basic level (so specific, right? Sorry, I haven’t had my coffee yet). This is a big step forward research-wise and closer to correcting the gene problem than anything before it. So that’s exciting!
Thanks for investing in CF research. My cousin’s (8 year old?) son told me this week that I’m “so mature” (heh) — obvious proof that CF is not a “children’s disease” anymore like it used to be!