Realities of the Nano-rare: Episode 1 with Sarah Glass
About this episode
Sarah Glass shares her family's experience with a nano-rare disease and its impact on their lives.
A nano rare diagnosis does not just affect one person. It reshapes an entire family. Realities of the Nano-rare takes you inside that experience. Hear directly from n-Lorem COO and nano rare mom Sarah Glass as she joins host Stan Crooke to share the day-to-day realities of raising her son Ethan and the ripple effects on their whole family, including his older sister. Discover how they have adapted, what they have learned, and how they have built a new normal. Tune in to this powerful two-part series featuring both Sarah and Oliver Glass. On This Episode We Discuss: 5:08 – Introduction to Sarah Glass and her family's Nano-rare experience 9:00 – Initial challenges of accurately identifying Sarah's son Ethan had a Nano-rare disease 11:30 – Symptoms and telltale signs that there was something else going on with Ethan 14:45 – Identifying that Ethan has DYRK1A 17:20 – Challenges of finding solutions post-diagnosis 20:20 – Navigating Sarah's son's DYRK1A with her unaffected daughter 23: 04 – What's a good day with DYRK1A? 27:01 – What's a bad day with DYRK1A? 34:30 – Managing frustrations of taking care of someone with a Nano-rare disease 37:05 – Compromises in professional life 41:00 –…
Sponsors
Chemgenes
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