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From Diagnosis to Advocacy: Kasey Edwards’ Fight for SPG47 Research and Genetic Testing Awareness
On this episode Kasey Edwards shares her journey from being a stay-at-home mom to becoming a passionate advocate for her daughter diagnosed with SPG47, a rare neurodegenerative disorder. She discusses the emotional impact of the diagnosis, the formation of a nonprofit to support research, and the potential of AI in healthcare. Kasey emphasizes the importance of community, awareness, and the hope that exists for families facing similar challenges.
Takeaways
Kasey transitioned from a stay-at-home mom to a parent-driven researcher.
SPG47 is an ultra-rare neurodegenerative disorder affecting her…
The skinny
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