Author Archives: Stephen Shannon

The Many Perspectives of the FDA Approval of ORKAMBI

On Thursday, July 2, the Food and Drug Administration made the announcement that Orkambi had been approved for people with cystic fibrosis who are age twelve and older with two copies of the F508del mutation. The announcement was followed by a swirling of excitement through the CF community and…

Cystic Fibrosis and the Bacteria Within

Cystic fibrosis is a complex genetic disease that slowly takes the breath of those who have it by eroding the function of their lungs over time. At the core of this erosion is a diverse community of bacteria competing to assert dominance in the lung, inflicting chronic exacerbations that need…

Orkambi, Genome Editing, and a Few ‘Salty Girls’

The selection of articles I chose for this week is an attempt to capture recent events, along with one older article, showcasing the range of articles relating to the science and increased awareness being brought to the CF community ‘Salty Girls’ photo Series Challenges Notions of Beauty and Cystic Fibrosis…

Dum Spiro Spero: While I Breathe I Hope

What We Hope For I have found myself chasing a deferred hope waiting for my health to change, while watching it steadily decline. The release of Kayldeco by Vertex Pharmaceuticals Inc. in 2012 was a demonstration that the next generation of medications in cystic fibrosis therapy could begin to…


Featured Column

The Benefits of Being Sick

A banner for Lara's column, depicting a car on a road trip winding through a forest.
As columnist Lara Govendo reflects on her journey through CF and transplant, she realizes there are a surprising number of benefits.

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