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- In 1998, when Megan Crowley was fifteen months old, she was diagnosed with a rare form of muscular dystrophy called Pompe disease. Her brother Patrick, who was seven days old at the time, was diagnosed four months later. Pompe disease is a genetic disorder caused by a deficiency in the enzyme that breaks down glycogen.
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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.
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Jan 30, 2019 · On a Friday the 13th some 20 years ago, 15-month-old Megan Crowley was diagnosed with Pompe disease. A few weeks later, so was her newborn brother, Patrick.
Mar 1, 2017 · 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.
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...
- Myah Ward
Living with Pompe Disease Megan lives an ambitious and daring life. Refusing to allow Pompe to define her, she faces each new challenge equipped with vibrant resilience and a satirical sense of humor.
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.
Mar 1, 2017 · Megan Crowley, 20, of Princeton was a special guest of Trump's — there to illustrate his call to "slash the restraints" of the "slow and burdensome approval process at the Food and Drug...
