The Work You Never Planned to Do with Nasha Fitter | Motherhood, Rare Disease & Purpose

What happens when motherhood asks you to do work you never imagined?For Nasha Fitter, it meant stepping into a world of rare disease, medical research, caregiving, and advocacy – not because she chose it, but because her daughter needed her to.After her daughter Amara was diagnosed with FOXG1 syndrome, a rare neurological disorder that affects brain development, movement, speech, and cognition, Nasha found herself navigating a healthcare system full of gaps, impossible decisions, and information families are often left to uncover on their own.In this episode, Sara sits down with Nasha Fitter – Co-Founder & CEO of the FOXG1 Research Foundation and Co-Founder & Chief Business Officer of Citizen Health – for a conversation about caregiving, partnership, resentment, self-sacrifice, and what it means to build a life – and find purpose – inside circumstances you never would have chosen.Together, they explore the invisible labor of parenting a medically complex child, the emotional weight of becoming your child’s advocate, and how some of life’s hardest experiences can become the clearest roadmap toward the work we’re here to do.They discuss:• Why women are often conditioned to confuse self-sacrifice with love• The importance of building more help and support than you think you need• Resentment in partnerships – and what it may be trying to tell us• The hidden labor of caregiving and rare disease parenting• What happens when parents are forced to become medical experts• Turning personal crisis into advocacy, action, and infrastructure• How technology and AI can help close critical healthcare gaps• The power of purpose in holding a life togetherToday, through both the FOXG1 Research Foundation and Citizen Health, Nasha is helping build a better future for patients and families – accelerating treatments, improving access to care, and making rare disease less isolating, more informed, and more human.Episode links:Download Citizen Health and explore Ari, their AI assistant:https://apps.apple.com/us/app/citizen-health/id6740156339Follow the FOXG1 research journey:https://www.foxg1research.org/Support FOXG1 Research:https://secure.qgiv.com/for/foxg1researchfoundation/⭐️ Follow The Mothers and leave a 5-star review if this resonated💬 Share this episode with someone who needs to hear it📱 Join The Mothers on Instagram @themotherspod✍️ Subscribe to ⁠⁠Sara’s Substack⁠⁠ for reflections on life, work, meaning & motherhood💼 Find Sara on ⁠LinkedInThe Mothers is a production of Backline Media.