Concord...Land of Subarus and... nice people!

Yesterday was a The Book of Mormon kind of day. I jammed it on both flights on my way to New Hampshire and even had it cranked on the treadmill when I got to the hotel. I cannot get enough of this show!

So I was invited by the Dartmouth-Hitchcock CF care team to be the Keynote at their annual Family night. I jumped at this opportunity right away because I love family nights and I have never been to New Hampshire..perfect! One of the docs (Sasha) picked me up from the airport and I knew I was in good hands when I climbed into her Subaru and ended up at a sandwich shop that uses local Cheddar, great fresh veggies and their own baked bread. She gets it!. Seriously in my mind, a Subaru was what she was going to be driving and I was only praying that lunch would not be KFC or Applebee's..it was exactly what I had hoped.

Now if you know me you know that I love a good ice cream. So when I heard I was coming this way, Ben and Jerry's immediately came to mind. It got out at NACFC this month that I love Ben and Jerry's and I was promised a pint at last nights talk.

Promises Promises...Kathy drove 1.5 hours with this pint of Fish Food in a cooler on ice. It was delicious and made my night, even if it was more like a milkshake. Yummmy!

The Ben and Jerry's theme continued on as I was presented this shirt from Lynn when she announced me. I draped it on the podium just to see if I could maybe score a sponsorship.

150 people showed up last night which is just a remarkable testament to this clinic. I have never seen this many people at a family night and it just really energized me and got me excited. I felt incredible during my talk and was super excited to share my story and the "Blue Lighting" stats...when I was talking about how shitty I felt last month when I was sick and how quickly I turned around once I start back on BL I got a little choked up. A 70% increase in my PFT's in 1 week. Amazing!

To be able to share this info with these parents, patients and families is something that is hard to describe. There is nothing better than to see their faces fill with hope and smiles. So cool! It was great to connect with some young teens who admitted to me that they were not being super compliant. I tried to be as honest as I could with them and tell them how important these meds are. I even bumped elbows with one new friend and this serves as our pinky swear that she would do her treatments.

Ok this pic is amazing. When the program ended these three gals came over not only to chat BUT to invite me to their dairy farms. I saw pics of their cows & the farm and got to know a little bit about dairy farming. I'm still trying to figure out how these 3 have 2 dairy farms but they do and they are cool! I plan to come out this way in July for the Seacoast Safari bike ride so hopefully I can get up and meet some cows!

Highlight of the night was when on stage, the docs and other folks were calling VX-770/Kalydeco "Blue Lightining" without any hesitation. Serisously...we are on to something and I WILL make sure we get this name changed! Picture it, we won't even need the words..You doc will just stamp a blue lightning bolt on your RX pad.

Until next time!

Em

Blue Lightning

(It ain't easy wearing two ribbons..just wait until next year.)

So I have finally recovered from NACFC 2011. It always takes about 2 full days of sleep to do this..late nights and early mornings! I spent all of last week and this weekend in Anahiem, CA speaking, going to meetings, presentations, hanging with old friends and meeting some incredible people.

To make it easy I'm just going to list a few of the highlights and some pics to sum this trip up;

* Speaking for the Clinical Trials A-Z Short Course was so fun and it taught me a lot..like how to run a roundtable discussion!

* Presenting my view on how to Keep the In Patient and Out Patient CF teams in the loop..and some of my frustrations with Cross Contamination.

Being able to hang with my friend Kat from the Blooming Rose Foundation: Quack..Quack..Quack..

* Meeting my CF doc for a 6:30 am workout.

$17 cab ride to the nearest In N Out for a Neopolitan shake and a veggie.

Hanging with Dr. Pat Sosnay..you can't quite tell but this is me on his shoulders during Journey:

Dinner and fun with old friends Steve and Carol..or is it Carol and Steve?

* Meeting the Blue Lightning crew..including the chemists who discovered it! I really think we can get the FDA to change the name...

* Meeting 1 of the stars of The Power of Two, Isa Stenzel Byrnes and also Tiffany Christensen.

This:

Hanging with these two friends a lot:

Finally, being able to see my buddies and heroes who work tirelessly for the CFF including, Bob Beall, Rich Mattingly, Preston Campbell, Marybeth, Elise, Mary Dwight, Jason, Cynthia, Deann and the entire crew that put on this amazing conference! Thank you for doing what you do!

There was this buzz of excitement the entire week that is super hard to explain. I know that it is stemming from Kalydeco/Blue Lightning and the future of treating the basic defect in CF. This excitement definitely carried out onto the dance floor Saturday night because I must say there was some major improvement in the dancing this year.

This is the John Hopkins crew after the dance..I was supposed to be the topper but row two & three couldn't hold on! It was a valiant effort but we will get it next year...next year, my friends.

This is always one of the best weeks of my life and I cannot wait until next year!

Em