Meet Megan Crowley, the Rare Disease Survivor Trump Highlighted in Joint Address

Meet Megan Crowley, the Rare Disease Survivor Trump Highlighted in Joint Address


During his Joint Address to Congress tonight, Feb. 28, President Donald Trump called special attention to one guest in the audience: Megan Crowley, a young woman with Pompe disease.

Crowley, 20-year-old sophomore at the University of Notre Dame, and her father, John, met with Trump earlier in the day to discuss treatments for rare diseases just like Pompe disease. After Megan and her brother were both diagnosed with the disease as infants, there father went on to found a company focused on protein engineering technologies that can be used for treatment in Pompe.

Pompe disease is an inherited genetic disorder that causes a certain kind of sugar to build up as a byproduct in the body’s cells, thus ultimately impairing these cells to function normally. The cells most likely affected are certain organs and in muscle tissue. As a result, those with Pompe disease can have progressive muscle weakness in the heart, liver, skeletal muscles and nervous system.

Many on Twitter pointed out that Crowley herself was wearing white tonight, a color that has come to symbolize many women’s resistance to Trump’s rhetoric and policies.

And many others pointed out that Crowley is exactly the kind of American who stands to suffer the most should Trump move ahead with the repeal of the Affordable Care Act (ACA), known colloquially as Obamacare. Repeal of the ACA was a signature topic in Trump’s Joint Address this evening.

And yet as one Twitter user aptly pointed out:






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