Listening to families. Learning from experience.

How much does the first voice matter?

The First Voice Project is a parent-led research and education initiative exploring how Down syndrome diagnoses are communicated, how information is interpreted, and what factors most influence parental perceptions and decision-making.

A young boy with wet, curly hair smiling on a boat with water and a blue sky in the background.

About the project.

The First Voice Project is a parent-led research initiative exploring how prenatal Down syndrome diagnoses are communicated and experienced by families.

Through surveys, storytelling, and community engagement, we seek to better understand how information, communication, and support shape parental perceptions and experiences following a diagnosis.

People sitting at a wooden table, engaged in a discussion or meeting, with notebooks and pens in front of them.

Research and findings.

We are currently gathering survey responses and listening to family experiences from across the Down syndrome community.

Subscribe to receive project updates, emerging findings, and opportunities to participate in future research and education efforts.

Every story begins with a conversation.

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Your experience matters. Help shape future research by sharing your story.

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