If you’ve ever watched a State of the Union address or joint session of Congress before, you’re probably pretty familiar with all the tradition, pomp, and circumstance: the presidential entrance, the handshake line, and the tightly-scripted lines with space in between for thunderous applause or stone-faced silence as the case may be. And, of course, the guests that are brought along, whose stories are often woven into the president’s address. So, maybe you’re looking for some information ― for example, who is Megan Crowley, Melania Trump’s guest at her husband’s speech?
The answer, as detailed by USA Today, is that Crowley, who is 20 years old, is a sophomore at the University of Notre Dame, and has an extremely rare genetic disorder known as Pompe disease. Diagnosed at just 15 months old, Crowley is fortunate to be alive; Pompe disease can often prove fatal, with a risk of heart failure in a child’s first year, according to the National Institute of Health (NIH).
While there’s no way to know for certain whether her presence at the address foreshadows some sort of policy announcement by Trump, it’s definitely very apropos. That’s because Feb. 28 is the annual Rare Disease Day, designated as a day of awareness-raising for often-debilitating diseases that require medical innovation and research, despite affecting relatively small portions of the population.
Crowley and her family ― including her father, who launched a biotech company called Novazyme in response to her diagnosis ― will also reportedly be getting a private meeting with Trump, in addition to the guest spot at his address. It’s similarly unclear whether that meeting could indicate some kind of policy pronouncement regarding research into rare diseases, but it’s got to be a reassuring sign for people concerned that such research would tail off under Trump.
Rare diseases are one area where government action has proven important, as evidenced by the Orphan Drug Act of 1982 and the Rare Diseases Act of 2002. The fewer people suffer from a given disease, simply put, the less incentive there is for companies to put in the work.
Crowley will not be the only guest seated near Melania on Tuesday night, however. There will also be multiple family members of people slain by undocumented immigrants in attendance, which has led many observers to conclude Trump’s address may include some of the anti-immigrant rhetoric that’s been a staple of both his campaign and his early administration. The guests in question are Jamiel Shaw Sr., Jessica Davis, and Susan Oliver.