In this episode of "Moving Medicine Forward" – The Podcast, Jill Black, Validation IT Principal Auditor at CTI, shares the deeply personal story of her daughter, Emma, and their journey navigating this rare disease. She offers valuable insights into the challenges and impact of Rett Syndrome, while discussing her work at CTI and how being part of an organization focused on rare diseases fuels her hope and purpose. Jill reflects on her experience speaking at the 2024 Rett Syndrome National Summit, supported by NORD, and highlights the critical role of connecting with other parents and advocates. Tune in as Jill explores the exciting progress in Rett Syndrome research, including the FDA-approved drug and the work of pharmaceutical companies aiming to find a cure.
1:19 – Jill shares the powerful story of her daughter, Emma, and her journey with Rett Syndrome, including key insights into the condition and its impact.
6:10 – Jill discusses her role at CTI and how working with an organization that focuses on rare diseases has given her a sense of hope and purpose in making a real difference.
6:33 – Reflecting on her experience speaking at the 2024 Rett Syndrome National Summit, Jill talks about how NORD supported her attendance, enabling her to connect with other parents and advocates in the Rett Syndrome community.
7:50 – After 25 years of research, one FDA-approved drug is available for Rett Syndrome. Jill explains how 20 pharmaceutical companies are currently working to find a cure and the progress being made.
9:00 – Jill shares ways listeners can get involved and support families living with Rett Syndrome.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
My Favorite Murder with Karen Kilgariff and Georgia Hardstark
My Favorite Murder is a true crime comedy podcast hosted by Karen Kilgariff and Georgia Hardstark. Each week, Karen and Georgia share compelling true crimes and hometown stories from friends and listeners. Since MFM launched in January of 2016, Karen and Georgia have shared their lifelong interest in true crime and have covered stories of infamous serial killers like the Night Stalker, mysterious cold cases, captivating cults, incredible survivor stories and important events from history like the Tulsa race massacre of 1921. My Favorite Murder is part of the Exactly Right podcast network that provides a platform for bold, creative voices to bring to life provocative, entertaining and relatable stories for audiences everywhere. The Exactly Right roster of podcasts covers a variety of topics including historic true crime, comedic interviews and news, science, pop culture and more. Podcasts on the network include Buried Bones with Kate Winkler Dawson and Paul Holes, That's Messed Up: An SVU Podcast, This Podcast Will Kill You, Bananas and more.