Share your experience.

The First Voice Project is gathering experiences from families who received a Down syndrome diagnosis.

Take survey

  • Anyone who has received a Down syndrome diagnosis for their child is welcome to participate.

    We hope to hear from families with a wide range of experiences, including prenatal diagnoses, birth diagnoses, pregnancy losses, and pregnancies that were continued or terminated following diagnosis.

    There are no right or wrong answers. We are interested in learning from positive experiences, difficult experiences, and everything in between.

    Every experience matters. Every voice matters.

  • Your responses will help us better understand how diagnoses are communicated, what information parents receive, and which factors most influence parental perceptions and decision-making.

    Participation is voluntary, and you may skip any questions that do not feel relevant to your experience.

    We are working our way towards 500 responses!

  • 10–15 minutes

  • The survey is anonymous by default. Contact information is only collected if you choose to provide it in the optional story-sharing section.

Collage of children, families, and individuals enjoying various activities: smiling children, family moments, a man working in a cafe, a swimmer at the pool, a girl with a medal, a boy with a backpack, a child playing with blocks, a graduate, a runner in a race, and a woman with a young child, all in outdoor and indoor settings.