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About Us 2021 Newborn Screening Storytelling Toolkit

Every story is different. Every story is powerful. Tell your story today. Research shows that messages that embedded in stories are 22x more likely to be remembered than facts.

Download the Storytelling Toolkit here.

How to Tell Your Story 

  • Include the basics. Who, what, when, and why.
  • Be authentic. Everyone's experience may be different; tell your truth.
  • Use images or video. Photography is one of the simplest and most powerful ways.
  • Choose one story to tell. Focus on your main goal for telling your story. People only remember a few things at once, so remove any unnecessary details. 
  • Keep it short. Aim for 250 words or less.
  • Include a call to action. What's the goal for telling your story? To raise awareness? To advocate? Make sure to end your story with a call to action.

Adelaide: A Rare Unicorn

Our daughter’s life was saved not once, but twice by newborn screening. Adelaide’s first screening was done 38 hours after delivery and indicated she had an abnormal result for blood phenylalanine. Her second newborn screening diagnosed her with classic phenylketonuria and allowed for follow-up treatment of a rare condition called transient tyrosinemia of the newborn. After our initial newborn screenings, our family was in disbelief that nobody had ever heard of PKU. Due to Adelaide’s timely diagnosis, her brain was spared any damage, and with consistent blood monitoring and a strict diet low in protein, Adelaide lives a normal life. We are incredibly lucky that newborn screening allowed our daughter’s condition to be quickly diagnosed and efficiently treated. She is our rare unicorn and she shines so brightly! Read the family story on our Family Experiences page. 

  • Basics Covered. This family shares the basics of their daughter's story including what her newborn screening is, when she was diagnosed, and what their lives are like now.
  • Authentic. Authenticity can look like different things. For this family story, their authenticity came through when they shared details about the rollercoaster of emotions they experienced throughout the newborn screening process - disbelief, gratitude, and luck. 
  • Picture. Including a picture helps to build a connection to the audience and provides a visual to accompany the the story.
  • Short and Sweet. In 128 words, the family shares a focused story that details Adelaide's newborn screening diagnosis and treatment.
  • Clear Goal and Call to Action. The family accomplishes its goal of sharing Adelaide's story and raising awareness for newborn screening by expressing how lucky they are for Adelaide's early diagnosis and treatment.

Share Your Story 

Newborn Screening Awareness Month is a time to tell your story, to raise awareness, and to make a difference! Throughout the month, Baby’s First Test will be sharing stories and photos from families and individuals about their personal experiences with newborn screening.

Submit your story to be featured on our Family Experiences page.  Snap a family picture, share your story on social media, and include #2021NBS.


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