Catching and combating rare diseases, particularly those connected with genes, are huge personal battles that are truly hard to win. But how much more difficult is it for the people watching from the sidelines? Tony Martignetti sits down with Effie Parks, who shares her own struggle as a mom who fought hard for her child diagnosed with the rare CTNNB1 syndrome – an experience that taught her how to persevere amid the many medical hardships. She talks about how her pursuit for support and inspiration from other people gave birth to the Once Upon a Gene show, which evolved into advocacy of her own. Besides hearing her inspiring story of not giving up, join Effie as she looks on her podcasting career that serves as the stage for connecting people and finding support from one another.
The Virtual Campfire's Podcast