
From Diagnosis to Determination: Nell & Dr. Maggie Kang Share Their Rare Disease Journey | EP036
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No one trains you for the moment your child’s life changes forever—but what you do with that moment can define everything. I spoke with Dr. Maggie Kang and her remarkable daughter Nell, whose rare disease journey sparked a powerful shift from despair to advocacy, healing, and hope. As a caregiver, Maggie learned that taking care of herself made her a stronger support for Nell. Together, they transformed isolation into purpose—Nell through writing, art, and legislative action, and Maggie by embracing coaching and sharing hard-won insights with other parents. Their story is a raw, beautiful reminder that caregiving isn’t about fixing—it’s about showing up, evolving, and growing together, no matter how uncertain the road looks.
Freebie: https://maggiekangmd.com/caregiver
About Our Guests:
Dr. Maggie Kang Certified Life and Healthcare Coach | Rare Disease Advocate | TEDx Speaker Dr. Maggie Kang is a Yale-trained physician and certified life and healthcare coach who empowers parents to transform the journey of their child’s diagnosis into opportunities for growth, resilience, and purpose. After navigating her own daughter’s rare disease, Maggie also uses her expertise to guide parents through the healthcare system, helping them turn health challenges into leadership. A passionate advocate and TEDx speaker with nearly 200,000 views, Maggie has reached national audiences through her inspiring talks. She has spoken at the UCLA Luskin Center and the National Organization for Rare Disorders (NORD), and her daughter’s journey has been featured on CBS Evening News. Maggie is also a regular contributor to Psychology Today.
Social Media Links:
- Link to TEDx talk: The Truth About Pain and Suffering Will Change Your Life | Maggie Kan…
- TEDx reel: https://www.youtube.com/watch?v=V_JYN91dlIM
- Website: https://maggiekangmd.com/
- Specific link to my Lobster Mom Collective newsletter: https://maggiekangmd.com/lobstermom
- FB: https://www.facebook.com/maggiekangmd/
- LinkedIn:http://linkedin.com/in/maggiekangmd36
- Instagram: https://www.instagram.com/maggiekangmd/
About Me:
I have cared for many family members across the life span, experiencing the joys and challenges of child-rearing, the poignance of caring for parents, friends, and elder partners. I realized that I could not handle the stress of family caregiving 24/7/365. It was time for a new approach to caring. My health and happiness were slipping away. This is how Think to Thrive for Caregivers evolved. Let your mind meet your heart so you don’t lose track of your life.
Connect with Me:
https://www.deborahgreenhut.com/
https://www.linkedin.com/in/deborahgreenhut01/
Find my books here
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