WASHINGTON (CBSNewYork) — In President Donald Trump’s first address to a joint session of Congress on Tuesday night, he shared with the nation the story of a young woman named Megan Crowley.
“An incredible young woman is with us this evening who should serve as an inspiration to us all. Today is Rare Disease Day, and joining us in the gallery is a rare disease survivor, Megan Crowley,” the president said.
Megan, of Princeton, New Jersey, was diagnosed with Pompe disease when she was 15 months old and was not expected to live past five.
“On receiving this news, Megan’s dad, John, fought with everything he had to save the life of his precious child. He founded a company to look for a cure and helped develop the drug that saved Megan’s life,” Trump said.
Now, she is a 20-year-old sophomore at the University of Notre Dame.
“Megan’s story is about the unbounded power of a father’s love for a daughter. But our slow and burdensome approval process at the Food & Drug Administration keeps too many advances, like the one that saved Megan’s life, from reaching those in need,” Trump continued. “If we slash the restraints, not just at the FDA but across our government, then we will be blessed with far more miracles just like Megan.”
Last August, host of WCBS 880’s CEO Radio Ray Hoffman spoke with Megan’s father, John, for the show.
As Trump mentioned, John F. Crowley is the Chairman and CEO of the biotechnology company Amicus Therapeutics, Inc.
He talked about his upbringing in Bergen County and losing his police officer father in the line of duty.
He also talked about his education in business and entrepreneurship, and how lacking a formal background in science or medicine could have actually helped their cause.
“I think we wouldn’t have taken some of the risks that we did, and we probably would not have moved as fast as we did way back then,” Crowley said. “But again, remember that first medicine was so crucial because with Pompe disease in our kids their hearts were so tremendously enlarged, they would have died from heart failure. By the time they finally did get that medicine, they were within months of dying. So it was a race against the clock, but it was one that was necessary.”
And of course, he couldn’t help exuding pride for his daughter and her remarkable journey.
Hoffman asked Crowley to complete the sentence: “Megan Crowley is about to begin her sophomore year at Notre Dame…”
“And we couldn’t be more proud,” he said.
“What she did to go through and to overcome adversity her freshman year, what the university did to adapt for her was incredibly inspiring,” Crowley said. “It’s a great lesson that even as tough as Megan is, she can’t do it all herself. She has relied throughout her life on a lot of people, just as I have relied on a lot of people, and my wife has relied on a lot of people.”
“But finishing that freshman year at Notre Dame and finishing with a 3.45 last semester GPA on the Dean’s List, we were really, really proud,” he added. “So she will finish the university in 2019 and I’m sure go on to do many, many great things.”