Patient Leader

My mission is to educate the general public and the medical community about Arnold Chiari Malformation and its associated conditions as well as the need for accessibility and inclusion for the disabled community. My young daughters have Chiari and it started me on this path to advocate for others. I want a brighter future for them and everyone fighting for equal opportunities in life.


Advocating for Another

Crystal Fretz has two beautiful girls with Chiari Malformation (among other condtions) as does she. She tirelessly advocates for her children, so they have the best healthcare and the best schooling. This means she homeschools them herself. She helps other people dealing with this condition too. She deserves this nomination. Even if im the only one  — Cassi

Crystal has two daughters with Chiari Malformation, as well as having it herself. Because of this rare diagnosis, Crystal has had to educate herself tremendously as she fights for the best care for her children, and all other children with this disease. Crystal fights every day, not only for her daughters, but every child with Chiari.  — Aimee

Past Awards Participation

Third Annual Health Activist Awards


Advocating for Another

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