I recorded the show prior to finding the perfect name for this podcast. The new name of the show is "The Rare Hour" with Christopher Velona. I dedicate this new beginning to our premier guest… Mrs. Effie Parks

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, Casey, 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.  Effie also has a daughter, Ezzy age 3, who gives her a run for her money in the speaking category. Effie is also the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with rare diseases. 

You can check out Effie's current work through these links below!

https://www.curectnnb1.org/

https://ctnnb1-foundation.org/our-team/

www.effieparks.com

https://www.thedisordercollection.com/