NACFC Recap

I had a good time at the NACFC this week and met a bunch of great people. It was especially exciting to run into Emily Schaller and Jerry Cahill as they are both two people that I admire in the CF community because of their commitment to exercise and no excuses attitude.

In case you missed them, here are some cool announcements to come out of the conference:

Aradigm Reports Successful Phase 2b Bronchiectasis Study with Inhaled Liposomal Ciprofloxacin

Data Presentations at the NACFC Highlight Denufosol’s Novel Mechanism of Action

Gilead's Cayston(R) Superior to Tobramycin Inhalation Solution in Six-Month Head-to-Head Cystic Fibrosis Study

Analysis Shows Novartis Drug TOBI® Associated With Reduced Mortality in Cystic Fibrosis Patients With Common Lung Infection

Pharmaxis Announces Positive Combined Phase 3 Cystic Fibrosis Trial Results

Innovotech's Biofilm Test Shows Significant Differences in Antibiotic Choices for Cystic Fibrosis Patients Compared to Conventional Testing

Vertex Pharmaceuticals Initiates Clinical Trial to Evaluate Combination Regimens of VX-770 and VX-809 Targeting the Defective Protein Responsible for Cystic Fibrosis -Primary endpoints of safety, tolerability and effect on CFTR function as measured by sweat chloride

ARIKACE(TM) Demonstrates Sustained Benefit in Multiple Studies and Over Multiple Cycles of Treatment of Pseudomonas Lung Infections in Cystic Fibrosis Patients Data Presented at the North American Cystic Fibrosis Conference

Discovery Labs Announces Presentation & Key Results of Phase 2a Study of Aerosolized KL4 Surfactant in Cystic Fibrosis at the North American Cystic Fibrosis Conference

What the _____?: October 21st, 2010

A while ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed all weeks so keep it coming!

Alright, what do ya got!?!?

Last week's photo with the winning caption:

1st: "I think the story says to kiss a frog not a hog. Clearly could sound confusing though!"

submitted by Kellie

2nd: "One of the unforeseen risks of xenotransplantation become apparent mid-kiss."

submitted by Elisha

3rd: "Screw kising the frog for her prince, mandy kissed a pig to get her King!"

submitted by Sean

Excited for the next few days...

These next few days are going to be jam packed (where does that phrase come from?)! I'm going to be meeting with a ton of people that I know by name and phone only.

Random thought: It's always interesting to see what these people actually look like in comparison to how they look in my head. Then of course I always wonder what the "phone Ronnie" must look like to them. I'm just really excited and thought I'd throw out that completely random thought that was swirling around in this little noggin of mine.

Anyway, I'm heading to Baltimore where the NACFC is being held this year (If by chance you're reading this and are in the area as well, send me a note and maybe we can do coffee). It's going to be a neat experience to be surrounded by all of the "CF" going on in the next couple of days. I know it sounds strange, because for the most part my life is CF, but to me, this is a different side of it. The CF life I'm used to is full of relationships, tips, stories and interactions with others in the community. During the next couple of days I'm going to be hit with CF from "the other side", the side full of doctors, scientists, pharma companies, etc. I keep up on almost all things CF, but it's always different to hear it from the horse's mouth rather than read it in a news article. In this setting, I'll also have the opportunity to ask questions, to dig a little and hopefully come away with an even better understanding of the most basic stuff.

I at least hope to come home with some exciting news for all of you. Generally, there are one or two big announcements at these things. Let's all keep our fingers crossed that there are even more. I'll be sure to post anything I hear ASAP.

So anywho, wish me luck, not too much hassle at airport security and safe travels!

Birthday Weekend Update

As many of you may have read, it was my birthday this weekend (October 16th, mark your calendars for next year....haha kidding!) and Ronnie did everything he could to make it wonderful. We got up early, got in a treatment, went for a nice long bike ride, and then had breakfast at this awesome place close to our house. We also enjoyed a great dinner at a local BBQ joint and went to a movie (The Social Network - go see it!) with Josh and Christine.

I'm sure many (or at least one) of you are wondering what Ronnie got for me, so I will share it with you - but mainly because I think it's the sweetest, cutest gift EVER. He got me what any fantastic hubby would get his beloved for her first birthday as a married lady. He got me COMFORTABLE. "Huh?" You're thinking. Yes, you read it right. His gift was to make me more comfortable in our home - and we shopped for my gift all afternoon.

You see, ever since we've moved in, we've bought necessities, but we've been holding off on decorative stuff for the most part because it didn't fall in the category of gotta-have-it. But that didn't stop me from endlessly talking about all the stuff we could eventually get, what we should do, and how it could look one day. We'd buy a little decorative something here and there, and I'd be blown away by the difference it made to warm the house up....so I was getting eager to make the house cozier; a little more homey.

So for my birthday, Ronnie found this unbelievably AWESOME furniture store, brought me there, and turned me loose. And are you ready for the best part? The business is moving locations, so everything was REALLY discounted. Do you know what I like better than getting new stuff? Getting deals!!! I think I'm a deal junky. It somehow feels like you're spending less, if you're spending the same amount but getting more for your money. Flawed reasoning? Yes. Can I change how I feel about that concept? Probably not. Anywhoo - so we went furniture shopping all afternoon and got some stuff that really transformed how the house feels.

A little of my birthday gift bled into Sunday, when we went to Home Depot and Lowes and bought a fan for our family room. We've had a gaping hole in the ceiling since we moved in, but yesterday was the day we decided it was time to bite the bullet, get a fan, and muddle our way through learning how to assemble and hang it ourselves....I'm happy to report that we didn't burn the house down and it hasn't fallen...yet.

So that's about it. All in all it was a fabulous birthday and I'm excited to see what 24 brings :)

PS - Below is a picture of my favorite new purchase - a great chair. It's a little funky, but I LOVE IT!!

It's in our study, and it's freakin' awesome. If you look closely, you'll notice the fabric has peacocks on it...how crazy awesome is that?