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Megan Crowley, a rising junior at Notre Dame, is putting her best foot forward to develop her personal brand online in a blog called High Heeled Wheels that documents her life and its challenges and triumphs as a person living with a rare disease called Pompe.
Jan 30, 2019 · Megan, like many born with this neuromuscular genetic disease, was unlikely to live much beyond her second birthday. Crowley — now the CEO of Amicus Therapeutics, which he established in 2002 — “settled on determination,” he said in an interview with Pompe Disease News.
Mar 1, 2017 · Crowley, 20-year-old sophomore at the University of Notre Dame, and her father, John, had met with Trump earlier in the day to discuss treatments for rare diseases like Pompe disease. Crowley...
Dec 5, 2023 · Nearly a quarter-century after plunging into biotech to find drugs to save Megan and her younger brother, Patrick, from a rare and deadly genetic disease, Crowley feared the battle had...
Aug 28, 2016 · Megan and Patrick receive infusions of the enzyme replacement therapy, called Lumezyme through ports in their chests every other week. “What the enzyme is designed to do is to...
- 2 min
- Jessica Mulvihill Moran
Nov 9, 2023 · Pursuit of this new treatment for LOPD, while working to find a hoped-for cure, began just more than 25 years ago when Crowley’s children were diagnosed with Pompe. Megan, now 26, was diagnosed at 15 months, and Patrick, now 25, was diagnosed as a newborn.
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Nov 29, 2019 · Megan Crowley was diagnosed with Pompe, a rare gentic disease, as a child and requires 24-hour care. A nurse helps her get ready for her day as a graduate student at UNC-Chapel Hill, where she...
