Among President Donald Trump’s 10 special guests for his address to a joint session of Congress last Tuesday was Notre Dame sophomore Megan Crowley.
Crowley has Pompe disease, a rare genetic disease that progressively weakens muscles, and in honor of Rare Disease Day, the president invited her and her father — John F. Crowley, the CEO of Amicus Therapeutics, a biotechnology company that works to find treatments for rare diseases — to be recognized in front of the entire nation. Editor’s note: Crowley spoke to The Observer with the assistance of her nurse, Deborah Larsen, who is quoted below.
“Her dad has been very active in his company, trying to develop medications for different rare diseases, not just the one that Megan has,” Larsen said. “The president actually wanted to meet somebody with a rare disease.”
Even after the Trump administration reached out to Crowley through her father, she could not fully process the “unexpected” invitation until she was waiting in line to meet the president, Larsen said.
“She cried. It wasn’t even an anticipated thing,” Larsen said. “It was totally out of the blue. It didn’t even feel real until she was in line in front of the Oval Office, waiting to meet the president. She didn’t even feel like it was real because it was such an unexpected thing. This is the president.”
Crowley said upon meeting the president and telling him what an honor it was to be his guest, he responded that it was an honor for him to meet her. Larsen said in addition to meeting Trump, Crowley was introduced to first lady Melania Trump and Vice President Mike Pence.
“[She] met him, he talked to [her] dad for like a minute or so and actually asked how he could help with the [Food and Drug Administration (FDA)] getting these medications further approved,” she said. “And while [her] dad was talking to the president, [she] met Mrs. Trump, who’s the nicest person. She’s gorgeous and she’s nice. And [she] didn’t know, but the vice president was also there. So she met the vice president.”
The biggest honor of the experience for Crowley was understanding that Trump had wanted to meet her specifically, Larsen said.
“It was definitely an honor, and not just an honor to meet the president, but to have the president want to meet [her] and to meet her family,” Larsen said. “She said she never would have imagined this in her wildest dreams.”
University President Fr. John Jenkins also expressed his support for Crowley after she was honored at the president’s address to Congress, Larsen said.
“The next day, Fr. John called her dad and expressed how proud he was of having her here at Notre Dame — how blessed he felt having her and her family [as] part of the Notre Dame community,” she said.
Crowley hopes her recognition at the event will bring additional awareness and funding to rare diseases, Larsen said.
“This also is good, she thinks, because it’s bringing awareness to more rare diseases and the struggle it is to get the medicine passed through the FDA,” she said. “Hopefully this will bring something into the future where somebody getting a diagnosis might not be fatal because you can’t get medication for it.”
Because the problem of a lack of solutions for rare diseases such as Crowley’s is so extensive, Larsen said, Crowley hopes she and her family have been able to make a difference in shining a light on this issue in the United States through this experience.
“[There are] 7,000 rare diseases,” Larsen said. “There are no cures. It was very important to her and to her family that this was something that, because of her meeting the president, might be something that’s brought to the forefront of medicine.”
