January 28, 2011



That number just blows me away.  Has it really taken thirty seven years for me to love my body?  To admit that I'm no longer a natural blonde and probably never was?  To own up to the fact that a size 10 is my version of 'petite'?  Simply stated, it's taken me thirty seven years to accept myself for who I am instead of worrying about who I am not. 

In less than six months I'm going to be turning 38 years old; dangerously close to 40 though a milestone all the same.  It dawned on me the other day that this, my 37th year, is especially poignant in light of the fact that 37 is actually the most recent the life expectancy released by the Cystic Fibrosis Foundation.  I'm no stranger to this statistic, in fact it was one of the first things I Googled when we got Lola's diagnosis: life expectancy and CF.  Where the answer to my search used to make tears well up in my eyes, I'm pleased to report that this is no longer the case.

I've accepted it.  It's there.  It is what it is.
And I've got roughly 32 more years to change it.

Five years ago, the same year that Charlie was born and long before we even knew he had CF, a pharmaceutical company out east by the name of Vertex submitted to clinical trials this little ole' drug by the name of VX-770.  Shortly thereafter, it submitted a second drug, VX-809, to clinical trials.  The aim of both drugs was to target the basic defect of cystic fibrosis at the cellular level.  Fix the cells, fix the problem.    Evidently, there's a bit more to it than my peas and carrots brain can articulate but that's the nitty gritty.  For those of you who want it spelled out, you can click here for a mini science lesson that does a pretty good job of explaining things if I do say so myself.

As I turn the corner on January and sail into these last six months as a thirty seven year old, I am looking at new beginnings. My glass is full up to the top and spilling over.   I am as hopeful as ever that VX-770 will gain final approval by the FDA and that VX-809 will continue to show promising results in its testing so that it too can move on down and out of the drug pipeline.  I often think about what it will mean not only for those battling CF, but for anyone battling a monogenetic disorder.  Getting a drug or combination of drugs that can punch a disease - can knock it out - at the cellular level is huge.  HUGE.  Could this pending breakthrough by Vertex eventually impact those fighting sickle cell anemia?  Huntington's Disease?  Hemochromotosis?  I can't get my head around it - my heart yes, but not my head.  Not yet.

So on May 21, 2011, five pairs of running shoes will be laced up in Des Moines.  We are participating in Great Strides, the biggest and most important fundraiser for the Cystic Fibrosis Foundation.  I would like to invite you to do the same, to walk a three mile stretch with us on that day, wherever you are.  Donations made to this event go towards funding the research so crucial to finding a control for CF.  Of you I ask not one, not two, but three simple things:

     Wherever you are on May 21, 2011, lace up and walk those 3 miles with us.

     $10, $20 or $200 - every single little red penny will fill the bucket.  Really, it will!

    Pass the link to my blog to your Facebook friends.
    Forward this link in an email to everyone you know
    Talk about CF to your colleagues at work, to your friends at church, to your buddy at the gym, to your cashier at the grocery store - tell them about the crazy picklepits lady who can't catch a break from her Fabio, who wrestled a pair of skinny jeans (and lost), who swears she's part Gitana and who would walk to the ends of the earth if it meant a cure for CF...tell 'em all...I don't care...

2011 is here. 
2011 is now.
2011 is it.

Now let's get out there together & grab it!


  1. Amazing post, Kelly! I'm passing it along now and I'll lace up in May so that all CF kids can lace up when they're 32, 42, 52, and so on. Thanks for sharing!

  2. Said beautifully! Love you lots chica!!!

  3. I agree beautifully said, great post!!!

  4. Awesome post! As someone with CF, I am extremely excited for the future and Vertex! I was in the VX-770 trial but had to withdraw for reasons not having to do with the drug but of other medication limitations while on the study. However, I know that people are really feeling a HUGE difference in the way that they feel - which is AMAZiNG and exciting!!