My Two Favorite Dorks

My Two Favorite Dorks

Friday, June 18, 2010

Drug Development Pipeline

This is something I like to take a look at from time to time - the drug development pipeline for CF medications. The two things that I am most interested in are VX-809 and TIP (Tobramycin Inhalation Powder). VX-809 is the "gene therapy" discussed in relation to CF (specifically for my mutation). It could be very very promising, but who knows how far off it is?

(From cff.org website)

Drug Development Pipeline


The Cystic Fibrosis Foundation has built a dynamic "pipeline" for the development of more new potential cystic fibrosis (CF) therapies than ever before. To treat a complex disease like CF, therapies must target problems in the airways and the digestive system.

In the CF drug development pipeline, there also are promising new therapies designed to rectify the cause of CF — a faulty gene and/or its faulty protein product.

Below is a "snapshot" of those potential CF therapies that are currently in development as of February 22, 2010.

Cystic Fibrosis  Foundation's Drug Development Pipeline
























Thursday, June 17, 2010

A Musical Confession

Firstly, apologies for so much time passing since my last post. I really do think about writing on here often, but have to balance that with time issues and having worthy content.

I have been doing really well. ...mostly. Actually, the way last week ended, I was thinking I might be headed for IVs, and I was going to take the weekend to rest up and see if I could recharge or if my fate was indeed sealed. During my fairly strenuous Saturday yoga class, I had a new experience - and I ain't talkin' enlightenment, baby! Rather, I coughed up a bit of blood during a sequence that involved a lot of bending over. I realize this might sound horrific to some of you. But it's not all that uncommon in CF.

The trick with hemo, as it's called, (short for hemoptysis) is to know whether the trigger (being in a smokey bar, say, or in this case bending over - which causes a rapid change in blood pressure), is something that just happens to annoy your lungs on that particular day or if it is a sign of infection. Mostly, the latter is true. However, there are some lucky folks who just bleed from time to time. While I thought the incident meant I was headed for IVs, since I was feeling well otherwise, my doctor and I decided to wait a few days and see how things went. And I've been back to normal, which is awesome.

Onto the topic of my post: music. A short musical history of my life would go something like this: The Police were the first band I ever fell in love with their music (thanks to my dad); high school I struggled to steer clear of the hippie music all around me, started listening to Nirvana, REM, U2 and stuff that sounds good when you're high; college brought some branching out, started liking a little jazz, got into Red Hot Chili Peppers, Foo Fighters, Ben Harper (!). In other words, I've been pretty main stream for much of my life.

Another confession: For many years, I had an addiction to shitty radio. Yes, shitty - top 40, one hit wonder, destined for a compilation of songs to one day be sold on a late night infomercial (and yes, I did think about buying one of those too!)

Now that we have that out of the way, I want to say that I have never, ever, with the exception of John Mayer, bought any of the shitty stuff I heard on the radio. I knew that it wasn't good music, but rather just something catchy to listen to and think about how that does kinda sound like that one guy you used to date. Ahh... isn't life funny like that.

Now, fast forward to last December. The CD player in my car had been broken for over two years, and when I was looking for a replacement it ocurred to me that I might like to get satellite radio. Todd was definitely into the idea (hoping also, no doubt, that my taste in music would improve with exposure to more than just my AM/FM radio). So I got Sirius radio. This was pretty much the beginning.

At first, I didn't listen to it much. I couldn't figure out my new radio, and besides, I had a lot of catching up to do on listening to all my CDs. But after a while, I started listening to a couple of stations. And I became interested in some of the bands, looked them up online. I'd go to Amazon and listen to samples of their albums. Then I discovered Pandora and, like its name suggests, things pretty much exploded.

I've been to the local music store three times in the last few weeks. I love browsing the used CDs section - I really hate paying full price for music unless it's something I know I'm really going to like. And I like the thrill of the hunt, and the randomness of what you can come across. It's like this whole thing I'd forgotten about - the total high that comes from finding an album you love, playing it over and over and over, and wanting to share it with everyone you know. There are all these amazing bands I've been missing out on! I have a lot to catch up on.