Realities of the Nano-rare: Episode 1 with Sarah Glass

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 – Planning for contingencies   43:10 – Unexpected tender moments of raising someone with DYRK1A  47:30 – Advice for managing expectations, future plans, and working with others    Make sure to check out our sponsor Chemgenes!