Khrystal K Davis on Clubhouse

Bio

🦓🦓🦓 Mom | Rare Disease Patient Advocate | Speaker 🎙 | Author 📕 🦓🦓🦓

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txrare.org

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Rare Disease zebra 🦓 momma to Hunter 👦, 10 years old, with SMA Type I the leading genetic 🧬 cause of death of infants. Momma to 5 👩👦👩👧👦

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Author of Hunt for a Cure: An Unexpected Adventure to Save a Life 📕 Hunter’s story & our greatest and unexpected adventure on how we saved our terminally ill newborn’s life.

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Speaker🎙at conferences and testified at US Congress House Energy & Commerce Health subcommittee hearing to protect and preserve access to development of lifesaving rare disease treatments.

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Avid global traveler 🌎✈️🚊🚎🥾

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Founding President of Texas Rare Alliance dedicated to improving access and health outcomes through education and advocacy.

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I’m a proud unexpected adventurer and I encourage YOU to accept the unexpected adventures in you life. Unexpected adventurers provide the most opportunity for growth.

I live each day with curiosity, compassion, and courage.

I live with the curiosity to learn what needs to be changed and how to change it.

I live with compassion for those I seek to serve.

I live with courage to improve the world for those I seek to serve.

🔵🟢🔵🟢🦓 Gratitude 🦓 🔵🟢🔵🟢