Become an Empowered Advocate

Welcome! My name is Khrystal K. Davis and I want to personally welcome you to my website

When doctors diagnosed our newborn Hunter with Spinal Muscular Atrophy (SMA), a rare disease and terminal illness, doctors told us there was no hope. This broke our hearts into a million pieces. Rather than live without hope, we chose to embrace Hunter’s rare disease adventure. We learned how to help Hunter and created hope where there was none. In doing this, I became an empowered advocate for Hunter.

I now help those with rare diseases and their caregivers become empowered advocates as well. You too can move from hopelessness when you become an empowered advocate in your rare disease adventure.

If you have experienced or are experiencing hopelessness, grief, or anger and want to take control of your rare disease adventure, then you are in the right place. Think of me as your ‘Rare Disease Guide.’

Here at I show people who are living with a rare disease diagnosis:

  • Simple and effective ways to become an empowered advocate
  • How to embrace your rare disease adventure to achieve the best possible outcome
  • Highly effective strategies to communicate with doctors and other essential medical staff so you can become an important member of your care team
  • How to learn from others who share similar adventures
  • And much, much more…
Five Essential Tips for Surviving a Rare Disease Diagnosis

If this is your first time visiting this website, enter your information in the form below and receive your free copy of Five Essential Tips for Surviving a Rare Disease Diagnosis, which provides invaluable tips for those with rare diseases and their caregivers.

If you would like to know more about me, find it here

I believe life is an adventure. I love traveling with my family and encountering all the adventures that cross our path.

Now that our paths crossed, welcome to the Hunt for a Cure adventure.

Hunt for a Cure, an Unexpected Adventure to Save a Life is an inspiring adventure story about resourceful parents who dared to defy the odds and save their terminally ill newborn son’s life.

The story offers hope to those diagnosed with rare diseases: one in ten Americans. It shows how our current health system and FDA effectively regulate us to death. Curtis and Khrystal challenged the status quo and showed what can be done with resourcefulness and determination. The book contains elements found in Tuesdays With Morrie, Lorenzo’s Oil, and Dallas Buyers Club.

Learn More About Hunt for a Cure