So excited to be the 2021 WEGO Health Award Winner for Best in Show: Podcast
Thank you to The Disorder Channel for selecting Once Upon A Gene as The Best Rare Podcast
Thank you to SPEAK UP TALK RADIO for selecting Once Upon A Gene as Cause Awareness 1st Place.
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 and through the isolation I was feeling, 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, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.
Once Upon A Gene Podcast
Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.
If you want to share your story please reach out at podcasts@ctnnb1.org
Once Upon a Gene is available on Apple Podcasts.
The Ultimate Rare Disease Resource Guide
Special thanks to my friend, Sierra Phillips for compiling it! Sierra is a twin mom, rare mom, heart mom, genetics aficionado, and relentless advocate. “In 2021 my son was diagnosed with Warsaw Breakage Syndrome and at the time there were less than 25 documented cases worldwide. During the short time we have been on this journey I have found that the best resources and tips have come from caregivers walking a similar journey within the rare and disability communities. The doctors, therapists, case workers, service facilitators often didn’t even know about resources I would tell them about that I had found from another parent! I am a passionate believer in knowledge is power and sharing knowledge empowers us all. I have been curating a resource list to share with families, friends, & professionals near and far to spread awareness about all of the amazing organizations and services that are out there.”
