Name’s Story

By: Parent Name, Parent of Child name, a # year old with a GENE genetic change

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What is your child’s relationship like with his/her siblings?

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What does your family do for fun?

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Tell us about the biggest hardship your family faces.

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What about your child puts a smile on your face?

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What motivates you to participate in research?

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How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?

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What have you learned about your child’s condition from other families?

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If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

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What is one question you wish researchers could answer about your child’s genetic change?

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Is there anything else you would like to share with other families?

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