When You Feel Betrayed by the Professionals

Today on the podcast, Jessica Patay and Effie Parks from @onceuponagene discuss the importance of community, and the tension that arises when you feel betrayed by the professionals during your child’s diagnosis process. Effie’s story and wisdom is rich and relevant - don’t miss this episode!About Effie and @onceuponagene - When Effie’s son, Ford, was born with an extremely rare genetic condition called CTNNB1 syndrome, she dove headfirst into the world of advocacy. CTNNB1 syndrome is caused by a deletion, partial deletion, or mutation of the CTNNB1 gene. It is a neurological condition that can cause a range of symptoms from mild developmental delays to severe physical and intellectual disabilities. To help herself and others cope with and manage raising a child with a disability or rare genetic condition, Effie started the Once Upon a Gene podcast. She shares her personal stories and interviews other parents, patients, advocates, doctors, scientists, and more.Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here. Donate to support all of We Are Brave Together's programs and offerings here. Can’t get enough of the Brave Together Podcast? Follow us on Instagram , Facebook and Youtube. Feel free to contact Jessica Patay via email: [email protected] If you have any topic requests or if you would like to share a story, leave us a message here.Please leave a review and rating today! We thank you in advance!Disclaimer