Because We Are Strong

INTERVIEW: Effie Parks & Once Upon A Gene

November 17, 2020 Theresa Thomas & Kristine Hoestermann // Guest: Effie Parks Season 1 Episode 16
Because We Are Strong
INTERVIEW: Effie Parks & Once Upon A Gene
Chapters
Because We Are Strong
INTERVIEW: Effie Parks & Once Upon A Gene
Nov 17, 2020 Season 1 Episode 16
Theresa Thomas & Kristine Hoestermann // Guest: Effie Parks

We are back with another episode of Because we Are strong. Today we are sitting down with Effie, the mother of a rare disease warrior and a woman determined to make a difference. Effie has created her own podcast called Once upon a Gene, in honor of her son Ford who was born with a rare genetic disease called CTNNB1 syndrome. Many genetic syndromes such as CTNNB1 syndrome vary in their severity. There are only about 200 known people in the world who have CTNNB1 syndrome. We could not be more excited to bring the mother of one of them on our podcast to tell you all about it. We all know mommas know best!

Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings.  After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks.  When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy.  Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with a rare disease.

_______________________________
Connect with Effie:

https://www.instagram.com/onceuponagene.podcast/ 

https://twitter.com/OnceUponAGene

https://www.facebook.com/groups/1877643259173346  

https://www.linkedin.com/in/effie-parks-741013164/

https://effieparks.com/




Support the show (https://www.patron.com/findyourrare)

Show Notes

We are back with another episode of Because we Are strong. Today we are sitting down with Effie, the mother of a rare disease warrior and a woman determined to make a difference. Effie has created her own podcast called Once upon a Gene, in honor of her son Ford who was born with a rare genetic disease called CTNNB1 syndrome. Many genetic syndromes such as CTNNB1 syndrome vary in their severity. There are only about 200 known people in the world who have CTNNB1 syndrome. We could not be more excited to bring the mother of one of them on our podcast to tell you all about it. We all know mommas know best!

Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings.  After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks.  When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy.  Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with a rare disease.

_______________________________
Connect with Effie:

https://www.instagram.com/onceuponagene.podcast/ 

https://twitter.com/OnceUponAGene

https://www.facebook.com/groups/1877643259173346  

https://www.linkedin.com/in/effie-parks-741013164/

https://effieparks.com/




Support the show (https://www.patron.com/findyourrare)