Carolyn Stiff

My CHEO Story

At 18 months of age our beautiful grand-daughter was diagnosed with Acardia-Gutierrez Syndrome following several tests. This led to our family researching this genetic disorder, discovering she was 1 of 100 cases worldwide. She is part of a research project at the Philadelphia Children’s Hospital, for medication that aims to slow the progression of the scarring on the white matter in the brain and lessen some of the symptoms. CHEO is working with the research team in Philadelphia by providing regular blood work and specialists appointments.

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Why I'm involved

I would like to make a contribution, no matter how small, to assist those families going through some crisis in their child’s life.

My Role

  • Provided feedback on the Patient Oriented Research Child Health Curriculum ( PORCCH)- Ethics Section
  • Attended Children’s Health Care Conference December 8-10, 2019
  • Research Project Reviewer: Can the analysis of built-in software in positive airway pressure devices with oximetry replace polysomnography in children on PAP therapy?