FoxG1 With Patricia from New Jersey in Person in Pennsylvania

Send us Fan MailFOXG1 doesn't just affect the person living with the diagnosis—it changes an entire family.In this special episode of Rare Connection, I travel to Pennsylvania for my first in-person podcast interview with New Jersey advocate, author, and mother Patricia Geurds.Patricia shares her daughter Kinsley's journey with FOXG1 syndrome, discussing the realities of hospitalizations, feeding tubes, a Broviac catheter, specialized surgeries, and the challenges of raising a child with a complex rare disease. She also explains how her family's experience inspired one child to become a nurse, another to become an author, and led her own path into advocacy.Near the end of the conversation, Patricia opens up about the moment that changed her life. A conversation with her life coach helped her realize that sharing her family's story wasn't complaining—it was honoring both herself and her daughter. That realization transformed her approach to advocacy and helped her rediscover herself.We also discuss PulsePoint Respond, a community CPR app, and Noom Vibes, a wellness app that encourages healthy habits and self-care.Whether you're a caregiver, healthcare professional, researcher, advocate, or someone living with a rare disease, this episode is a reminder that sharing your story can create connection, understanding, and hope.Topics discussed: What is FOXG1 syndrome?  Feeding tubes (G-tube, J-tube, NG tube)  Broviac catheters and specialized surgeries  Caregiving and hospital life  Family resilience  Rare disease advocacy  Finding your voice through storytelling Support the show