The Personal Rare Disease Journey Behind CNBC Cures with Becky Quick

We’re celebrating our 100th episode with a special guest, CNBC Squawk Box’s own Becky Quick! Becky’s daughter Kaylie lives with SYNGAP1, and their family’s rare disease experience inspired the creation of CNBC Cures, an initiative bringing together families, doctors, investors and regulators with one goal in mind: helping to raise awareness of, and improve patient outcomes for, the 30 million Americans suffering from rare diseases. Get to know Becky and her daughter Kaylie’s story in this episode of the n-lorem Patient Empowerment Program podcast. Sign up for the CNBC Cures Newsletter: https://www.cnbc.com/cnbc-cures-newsletter/    On this episode we discuss: 1:25 – Celebrating 100 episodes of the n-Lorem Patient Empowerment Program podcast 6:40 – Welcome Becky Quick; CNBC Anchor and mother of a Kaylie 10:35 – Becky’s journalistic origins and path 16:13 – Launching CNBC Cures and the need to help others facing rare diseases 23:00 – Navigating life with the challenges caused by rare disease 29:03 – Kaylie’s SYNGAP1 diagnostic odyssey 42:10 – Tending with the loss of control 43:56 – Non-verbal does not mean lacking understanding 48:30 – SYNGAP1 explained 59:01 – Hope is powerful ----- Make hope possible with a donation in support of nano-rare patient programs: https://www.nlorem.org/donate/  This episode is made possible thanks to our sponsors: Learn more about Chemgenes - https://www.chemgenes.com/