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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.\\xa0 After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks.\\xa0 When she learned that Ford had been born with an extremely rare genetic condition \\u2013 CTNNB1 syndrome \\u2013 she dove into the world of advocacy.\\xa0 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.

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Connect with Effie:

https://www.instagram.com/onceuponagene.podcast/\\xa0

https://twitter.com/OnceUponAGene

https://www.facebook.com/groups/1877643259173346 \\xa0

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

https://effieparks.com/

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