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Our Mission is Personal with Sarah Glass

Author
n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)
Published
Wed 21 Feb 2024
Episode Link
https://patientempowermentprogram.podbean.com/e/our-mission-is-personal-with-sarah-glass/

For n-Lorem’s Chief Operating Officer, Sarah Glass, the mission of n-Lorem is personal. Her son Ethan was diagnosed with a nano-rare mutation. A geneticist by training, she joined n-Lorem to oversee and direct the organization’s efforts to provide hope and potential help to those who need it most. It's more than just a job for her; she's powered by her son and the entire nano-rare community.


1:20 Sarah’s background, early life, and scientific interests


7:20 Thinking about the patient experience while at a Contract Research Organization


8:43 Rare disease trails are relatively new


10:54 Sarah’s son, Ethan, is a nano-rare patient


16:15 How long it took for Ethan to receive a diagnosis


21:35 Ethan's diagnosis and symptoms


25:55 How Sarah heard about n-Lorem


29:30 How does one come to terms with caring for a nano-rare child; How do parents continue looking for opportunities of hope when they may feel hopeless


32:58 What Sarah has learned while at n-Lorem


36:48 The biggest surprises Sarah has encountered during her journey at n-Lorem

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