Storming the Hill – CF Advocacy Day in D.C.

Soon, I will be heading to our nation’s capitol to participate in the Cystic Fibrosis Foundation’s annual advocacy event, “March on the Hill”. What an honor it will be to help deliver information critical to our cause to our elected officials. With the recent approval of Kalydeco, it will be especially exciting to share our views on drug development and approval policy.

The following is a letter I wrote to friends and family last year, after my first experience on Capitol Hill:

In the nine years since Andy’s passing, much has changed in the fight against cystic fibrosis (CF). The diagnosis of CF still causes fear but, thanks to research, doctors now have a clearer vision of the root cause of the disease. This clearer vision gives us hope and fuels the progress toward a cure. One thing that has not changed is my family’s commitment to Andy’s memory through our participation in the Cystic Fibrosis Foundation’s annual Great Strides Walk in Nashville, TN with our walk team Roo’s Crew.

Today, the Cystic Fibrosis Foundation (CFF) is supporting approximately 30 potential new treatments currently in development–that’s more than in the entire history of the disease. The CFF is also expanding its medical research program by $100 million over the next five years to focus on developing therapies known as CFTR modulators, which address the underlying defect that causes CF. Researchers are optimistic that the CFF is on the right path to fundamentally change the treatment of CF by targeting the cause of the disease.

Andy, my husband, and me – Hawaii 1998

My heart swells when I think of how happy Andy would be to hear this news. Though we experienced the worst outcome of CF, there are many reasons why the broad-view CF story is one of hope. It is a story of success, but we haven’t crossed the finish line.

On March 17, 2011, I joined my friend and fellow CF advocate Marissa to share this story with several of Tennessee’s legislators at the CFF’s annual March on the Hill event in Washington D.C.  The CFF receives no federal funding, but as lawmakers look at making significant budget cuts in response to our country’s current financial crisis, we feel it is especially important they understand the role federal investment plays in the development of the drugs that treat CF.

We described how basic research funded by the National Institutes of Health (NIH) accelerates the development and testing of treatments supported by the CFF. We also explained that the Food and Drug Administration (FDA) plays a critical role at the other end of the research spectrum. Cutting the jobs of professionals who understand the nuances of rare diseases could essentially halt the process of moving newly developed treatments through to approval. This would result in those treatments sitting on the bench instead of being utilized to change, improve, and save lives. The plea to our legislators was to sustain funding to the NIH and FDA.

Meeting with Congressman Jim Cooper, March 2011
Image by Cystic Fibrosis Foundation

In order to cross the finish line with a cure, the CFF also needs sustained funding. As mentioned above, they receive no federal funding. Nor do they receive backing from major drug companies, because these companies do not see supporting rare diseases a profitable endeavor. Contributions from folks like you and me are what make CF research possible.  Words cannot express the depth of gratitude I feel for the support you continue to provide in memory of Andy.


Here’s to hoping for another successful March on the Hill!


No One Truly Knows How Hard You Try

It’s been a couple of weeks since I posted about my half marathon training.  It’s past time for an update!

Today marks the beginning of training week number seven and I can’t believe how far I have come.  Physically, I can now do a six mile run and, starting this week, will be averaging 20 miles a week.  I’m sure my 12 minute mile isn’t fast by “runner standards”, but considering that I’m new at this (and my routes include hills), I’ll take it!

What I want to share with you today is the breakdown of my Week Five; the week I mentally turned the curve:

That Monday I found myself thinking strange thoughts; as I drove past a pair of runners I thought “Yeah, the weather’s great for a run!  I wish I could join them.” —-WHAT?  Where did that come from?

As I explained here, I will be running the half marathon in memory of my brother and in support of CF research.  So when the news of the FDA’s approval of Kalydeco broke on Tuesday, I was walking on air.  I was so elated that I figured I would rock my 4 mile training run.  Ah, but that was not the case.  Instead, it ended up being a brutal, ugly, fight-for-every-mile kind of run.  It left me deflated, frustrated, and glad that cross training was on Wednesday’s agenda.

When I strapped on my running shoes that Thursday, I was plagued by negative thoughts:  What if I have another crappy run?  What if I get injured?  What if can’t see this commitment through?  Then, about midway through my run, I decided there was no room for negative thinking.  I pictured Andy, thought of Kevin Dwyer and so many CF friends, and was reminded of the courage and determination CFers need just to survive.  Remembering why I signed up for this, I shed the last scale of doubt and embraced it – I’m gonna do this!   I AM A RUNNER!

Image shared from another source

A friend of mine shared this picture during my Week Five.  Its sentiment certainly rings true for runners.  When you simply replace “running” with “living”, it rings true for all.

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