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
324
Episodios
28 min 21 sec
Duración Promedio
Inglés
Idioma
Duración Total:
153 hr 9 min
Todos los Episodios
Time is Brain - SynGap Research Fund with Mike Graglia
30 Jul, 2020Time is Brain: SYNGAP Research Fund with Mike Graglia Bo Bigelow and Daniel DeFabio have started a TV channel called The Disorder Channel where you can see all their rare stories in one place. You can access the channel with …
Duración: 35 minBonus Episode - Usher Syndrome Type III with Eleanor Griffith from Grey Genetics
27 Jul, 2020Physical and Emotional Well-Being for the Caregiver with Tyra Skibington
23 Jul, 2020Physical and Emotional Well-Being for the Caregiver with Tyra Skibington Tyra Skibington lives in Kelowna, British Columbia with her family and she's the Founder of Mind Over Mat, a yoga and fitness studio. She's a superwoman in the world of …
Duración: 46 minNext Steps - A Journey Through CRPS to an Above the Knee Amputee with Whitney Lavender
16 Jul, 2020Next Steps: A Journey Through CRPS to an Above-the-Knee Amputee with Whitney Lavender Whitney Lavender lives in Texas with her husband and two sons. I discovered her through her advocacy on Complex Regional Pain Syndrome (CRPS). She was taking a …
Duración: 34 minRare Like Us with Taylor Kane
09 Jul, 2020ANNOUNCEMENTS Don't forget to register for the NORD 2020 Living Rare, Living Stronger Patient and Family Forum streaming July 18th-19th. I'll be on the parent panel on the 19th talking about stress reduction and caregiver well being. Register here. Head …
Duración: 37 minFounder of LakiKid - Sensory Tools for Home and Classroom with Jason Hsieh
02 Jul, 2020Founder of LakiKid: Sensory Tools for Home and Classroom with Jason Hsieh NORD, the National Organization for Rare Diseases invited me to be a speaker at the 2020 Living Rare, Living Stronger Patient and Family Forum on a breakout panel …
Duración: 28 minAnna Laurent on Alagille Syndrome and Her Road to Advocacy
25 Jun, 2020Anna Laurent on Alagille Syndrome and Her Road to Advocacy My guest today has a rare genetic disorder called Alagille Syndrome, which she was diagnosed with at 6 months old with no prognosis. Anna Laurent is a vivacious 20 year …
Duración: 38 minSage Graves - Estate Planning, Guardianship, Special Needs Trusts
18 Jun, 2020Sage Graves - Estate Planning, Guardianship, Special Needs Trusts Today we're talking about a really important topic- planning for our kid's future. Sage Graves is an attorney local to the Seattle area, here to share information about wills, estate planning, …
Duración: 38 minThe Ladies Behind the Edits
11 Jun, 2020The Ladies Behind the Edits I want my audience to know Erica and Devona, such a big part of my show. They make everything sound beautiful, put it all together and I'm grateful to have stumbled across them. EPISODE HIGHLIGHTS …
Duración: 34 minLoving Large: A Mother's Rare Disease Memoir With Patti Hall
08 Jun, 2020ONCE UPON A GENE - EPISODE 033 Loving Large: A Mother's Rare Disease Memoir With Patti Hall This episode is about the larger-than-life love that a mother has for her son. Patti Hall is the author of the book, Loving …
Duración: 41 min
