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 daughter.
• The journey began with a shocking diagnosis and a search for support.
• Kasey leveraged her background in healthcare to navigate the challenges.
• The formation of a nonprofit was a pivotal moment in their journey.
• AI technology has the potential to revolutionize rare disease research.
• Community support is crucial for families dealing with rare diseases.
• Kasey aims to create a feedback loop between business and research funding.
• Awareness and education are key to helping families find resources.
• Kasey encourages parents to find beauty in their unique journeys.

Keywords

Kasey Edwards, SPG47, rare diseases, nonprofit, gene therapy, AI in healthcare, venture philanthropy, parental support, awareness, cerebral palsy

Today's guest, Kasey Edwards, can be found online at:

Website: https://cartwheelsinchaos.com/

LinkedIn: https://www.linkedin.com/in/kasey-edwards-7899b63

Facebook: https://www.facebook.com/people/Cartwheels-in-Chaos/100091989288711/

Your host, Scott Turman, can be found online at:

BrightRay Publishing: ⁠https://brightray.com/⁠⁠⁠

Entrepreneur Website: ⁠https://scottturman.com/⁠⁠⁠

LinkedIn: ⁠https://www.linkedin.com/in/scottturman/⁠