Personal Experiences of Genomics

These testimonials, which give accounts of circumstances such as having a child with a rare, previously undiagnosed genetic illness, down syndrome or a personal history of a cancer predisposition syndrome, provide insight into the unique concerns of these individuals and their families.  

  • When a Disease is Rare – The Story of a Father and his Child with an Unknown Genetic Disorder
    • Mr. Reston shares the difficult journey that his family took, after his healthy 18 month daughter fell ill and became intellectually and physically disabled.  He discusses  the plethora of tests that his daughter received leading up to her diagnosis of a rare genetic disorder and how researchers can help families understand the world of genomics and its importance to future treatment and therapy
      • Speaker: James Reston Jr
      • Talk starts 19 minutes and 45 seconds into the recording
  • Walking with Scientists: A Father, His Genetically Disabled Son, and Their Adventures with the Scientific Research Community. (not available)
    • Ian Brown shared the story of his son with a rare genetic syndrome. He discussed his experience with the research world, such as the gap between his expectations as a parent and what researchers seemed to promise.