Once Upon A Gene
Sobre este podcast
Descripción del podcast
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
Duración Total:
160 hr 13 min
Todos los episodios
Creating Space for Mental Health for Men Living with Rare Diseases with David Ross
22 Abr, 2021David Ross is a patient advocate, passionate about mental health and creating space for males experiencing mental health struggles. His activism began in 2017 when he was diagnosed with a rare disease called Cowden syndrome. He became dedicated to raising …
Duración: 27 minEffisode - Adventures in the Grocery Store
20 Abr, 2021Intro music by Scott Holmes
Duración: 10 minMedia with a Mission with Believe Limited CEO Patrick James Lynch
15 Abr, 2021Media with a Mission with Believe Limited CEO Patrick James Lynch Patrick James Lynch has to inject himself with medication every other day because his liver doesn't produce a protein that helps his blood vessels seal when they burst. He …
Duración: 40 minTop 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 min
