Once Upon A Gene
As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.
Autor: Effie Parks
332
Episodios
28 min 37 sec
Duración Promedio
Inglés
Idioma
Duración Total:
158 hr 24 min
Todos los Episodios
Top Tips on Advocating For Your Child with Momvocate Kara Karlson
08 Abr, 2021Kara Karlson is a fellow rare disease mama and attorney who is advocating hard in the policy world. She's currently serving on the Governor's Developmental Disability Advisory Council ("DDAC") where she helps set policy and develop programs for the developmentally …
Duración: 23 minEffisode - Nacho, Nacho Man
06 Abr, 2021TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast CONNECT WITH EFFIE PARKS Website Twitter Instagram Built Ford Tough Facebook Group
Duración: 6 minAllStripes - Jump Start New Research for Your Rare Disease with Caitlin Nichols
01 Abr, 2021ONCE UPON A GENE - EPISODE 076 AllStripes: Jump Start New Research for Your Rare Disease with Caitlin Nichols Caitlin Nichols is the Scientific Affairs and Research Manager at AllStripes— the first and only research platform dedicated to rare diseases. …
Duración: 26 minRare Mom Madeline Cheney - The Rare Life Podcast
25 Mar, 2021Fellow rare mom and podcast host, Madeline Cheney, is joining me for a chat today. Be sure to check out her podcast, The Rare Life Podcast. And don't forget to subscribe! EPISODE HIGHLIGHTS Tell me about yourself and your family. …
Duración: 32 minEffisode - An Advocate's Elevator Pitch
23 Mar, 2021Intro music by Scott Holmes
Duración: 5 minRare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation
18 Mar, 2021Mariah Gillaspie started the Lightning and Love Foundation for her two daughters, Abby and Emma, who both have the only known mutation of the fact THAP12 gene. EPISODE HIGHLIGHTS Tell us about yourself, your daughters and Lightning and Love. I'm …
Duración: 29 minDavid Solomon - CEO of Pharnext - A Biopharmaceutical Company
11 Mar, 2021Dr. David Solomon is the CEO of Pharnext, an advanced clinical-stage biopharmaceutical company using artificial intelligence to create therapies for rare and orphan diseases. Their first drug for Charcot-Marie-Tooth Disease (CMT1A) is in it's second pivotal Phase 3 trial. CMT1A …
Duración: 20 minEffisode - The Friendship Circle - Lilly and Ford
09 Mar, 2021Intro music by Scott Holmes
Duración: 5 minThe Importance of Early Intervention with Kindering CEO Lisa Greenwald
04 Mar, 2021ONCE UPON A GENE - EPISODE 072 The Importance of Early Intervention with Kindering CEO Lisa Greenwald Early intervention or birth to three are the vital services kids can receive in the beginning of their diagnosis journey. Dr. Lisa Greenwald …
Duración: 27 minAccelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics
25 Feb, 2021After losing his child to a rare congenital disease in 2012, Harsha Rajasimha applied his years of post-doctoral genomics data research experience at National Institutes of Health to develop a technology platform to accelerate clinical research. As the Founder and …
Duración: 28 min
