Mara Goes to Washington

Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.

Dec. 17, 2015 | 3 min read
Mara Cray

For this post, I invite you to journey with me to our nation's capital. Rest assured that I am not about to open up my Facebook page and subject you to an onslaught of photos of the food I ate, the monuments that I visited or that long-distance, poorly lit shot of the guy who sort of looked like the President. None of that.

The purpose of my visit to Washington wasn't to sightsee. I was there to serve on a panel to discuss the recent developments in precision medicine. Anyone who's been following the development of Kalydeco, Orkambi or our new baby 661 knows how pivotal precision medicine has become in the treatment of cystic fibrosis. For those who don't know, this new approach allows for the treatment of the genetic defect that causes CF, rather than treating the disease's many symptoms. It's a smarter, more effective form of treatment. These developments have cystic fibrosis patients especially jazzed (myself included), so I was eager to share this success with members of congress and their staff.


As soon as I took my seat behind the panelists' table in the Rayburn House Office Building, I realized how lucky I was to be sitting with a group of people who are all at the top of their respective fields of research. I was sharing a panel with Dr. Noreen Henig of ProQR Therapeutics and Dr. Eric Green of the National Human Genome Research Institute at the National Institute of Health, and our discussion was moderated by the CF Foundation's Dr. Bill Skach.


It had been great to talk to the other panelists beforehand, but to hear them speak about their research was nothing short of amazing. I'm a CF patient, but beyond my involvement in studies and clinical trials as a human guinea pig, I don't know much about cystic fibrosis research.

For me to be able to hear about the great CF research being done from the experts themselves was fantastic … Google's got nothing on a panel of scientists.

We were also joined by Representatives Jim McGovern (D-Mass.) and John Fleming (R-La.). Having actual politicians in the audience made me feel intimidated and politically inexperienced, like I should have joined the debate team or ran for student body president. However, the Congressmen listened very intently and respectfully, which was very nice and made me feel welcomed.


The whole trip was fantastic. I got to advocate for my disease on a congressional stage -- my first time doing so -- and I was able to share with lawmakers the trials and tribulations that many CF patients must face. Even more importantly, I helped herald the wonderful changes coming from precision medicine.

I must say, it feels great to deliver good news.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Mara has been living with CF for 24 years. She recently earned her master's degree in public relations and hopes to continue her work in health communications. In her spare time, she loves reading, baking, and spoiling her dog, Zoe.

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