We were devastated to hear that Natali Marsarkaya passed away last week after a long and brave fight with Jackson-Weiss Syndrome and Chiari Malformation. When she shared her story with Global Genes, she did so open-heartedly. She was honest about the challenges the disease brought to her life, but hopeful about what was to come in her future.

Natali had recently completed her first year at University of Boston where she was studying to be a doctor–one who might be able to help other patients like herself with these complex and ultra-rare diseases.

Our hearts go out to her family, friends, and all of those she shared hope and advice with in response to her story.

You can read Natali’s story here.