Fait Accompli!

I’m not sure which is the greater accomplishment; finally sitting down to write this post or successfully completing my first half marathon.  In both cases, fait accompli!

Thanks to four months of training, three main sources of inspiration, two knee braces, one tube of Aspercreme, and loads of support from friends and family, I survived the Country Music Half Marathon.

How was it, you ask?  As one of my pace group friends noted (in Sesame Street style), “[The] half marathon was brought to you by the letter H; hideously hot, kind of horrible, and hilly – oh, and HALLELUJAH I didn’t do the full!”

Might not’ve looked pretty, but I DID IT!
Image by MARATHONFOTO®

Hideously hot:  The race day forecast was Sunny and 80°F.  Factor in the Twenty Degree Rule – dress as if conditions are 20 degrees warmer – and you get hideously hot.

Kind of horrible:  One thing training couldn’t prepare me for was navigating the stretches made slippery by discarded water cups, banana peels, and spent GU packets.  Perhaps encountering such areas is not a harrowing experience for other runners but, given my past knee injuries, to me they felt like virtual mine fields.

Hilly:  Ask anyone who has ever participated in a race in Nashville and they’ll tell you about the hills.  Since I’d already covered most of the course during training, I had a good sense of what to expect.  But hitting all of the hills during one run in sweltering heat?  That was tough.  As I started up the fourth hill (at mile seven), my mental focus began to crack.  An unexpected shout-out from my buddy Allen (who happened to be camped out midway up) gave me the push I needed to get to the top.

Hallelujah:  Seeing runners being treated by EMTs between miles nine and ten was a wake-up call; though I was tired and hot, I wasn’t feeling that bad.   Mile eleven was my best mile because it was bookended by cheers from family and friends – my parents at the start and friends from the CF Foundation at the end.  I finished the last 2.1 miles (yes, the .1 counts, by dammit) thanks to my friend and running mate Lori.  She stuck by me the entire race, encouraging me along the way.  And though we had hoped to finish in 2 hours and 30 minutes, I breathily said hallelujah as we ran across the finish line at the 2:45 mark.

Ultimately, running the half marathon was a great experience.  The four months leading up to the race, however, were life changing.  While I knew I would reap physical health benefits, I could not have anticipated the mental – even spiritual – transformation that occurred.  As cliché as it sounds, I truly feel that when you put your mind to it and work hard you can accomplish anything. 

Saving the best for last, I’m thrilled to share that two of my CF friends also completed the half marathon, another completed the full marathon, and – to date – Roo’s Crew has raised nearly $6,000 for vital CF research!  I can just see the smile on Andy’s face. 🙂

Progress!

Hello blogosphere.  Yes, it’s been awhile.   Seeing that I haven’t posted since the half marathon, perhaps you’ve wondered if I survived.  Well, I did live to tell about it and shall do so soon!  But today, I have some updates to share from the CF world.

Progress in the Lab

Last Monday, May 7 Vertex Pharmaceuticals announced interim results from a Phase 2 clinical trial of Kalydeco™ and VX-809, a CF drug in development.  The results showed a significant improvement in lung function in people with two copies of the most common CF mutation (Delta F508) who received the two drugs in combination.  Both Kalydeco™ and VX-809 are designed to treat the underlying cause of CF.   While these drugs would not be cures for CF, it appears they have the potential to control certain symptoms of CF to a great degree.  Click here to read more about the Phase 2 interim results.

Related articles: http://bit.ly/K76iUX and http://onforb.es/JMy4ah

Progress on the Hill

In this post, I explained that one of the key items on the CFF’s public policy agenda is to get the EXPERRT Act  included in the House and Senate versions of the Prescription Drug User Fee Act (PDUFA).  In short, the EXPERRT Act would require the FDA to ensure that opportunities exist for consultation with external experts on products for CF and other rare diseases.

I am thrilled to share that representatives in both the Senate and the House heard our voices!  The EXPERRT Act has been included in the final versions of PDUFA for both the Senate and the House.  The bills will now proceed to the Senate and House floors for final vote in the near future.   The CFF, my fellow advocates, and I are cautiously optimistic that the core of the EXPERRT act will remain in the final PDUFA bill which will be signed into law.  My State Advocacy co-chair Marissa and I especially appreciate the outreach made by our fellow constituents to Representative Marsha Blackburn.  As a member of the Health Subcommittee of the House’s Energy and Commerce Committee, Congresswoman Blackburn’s support was paramount!

I think this goes to show that we should all follow William James‘ advice:

Act as if what you do makes a difference.  It does. 

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