Research Study for Parents of Children with NVLD

The closing date for Part 2 of the survey has been extended to Saturday, July 31st

Attention: Parents of children (up to age 30) with NVLD who completed Part 1 of the survey!

With support from The NVLD Project, Dr. Prudence Fisher at Columbia University has put together a computer survey to learn more about individuals (ages up to 30) with NVLD from the perspectives of their parents (or caregiver, close relative, etc.).

Last year, 230 parents/caretakers completed the survey. The survey asked about their child’s experiences with NVLD and about a possible “name change” for NVLD. We are grateful to everyone for contributing to this research!

If you completed the Part 1 of the survey…

Recently an email was sent to those 230 parents asking them to complete a second part (Part 2) of the survey. So far, 90 people have completed Part 2 (thank you!) and 40 parents are part-way through (keep going!). We very much hope that everyone who completed Part 1, will consider completing Part 2. Part 2 collects more information about your child’s relationships experiences in school (or working), special talents, self-esteem, and other important areas of functioning.

Part 2 is scheduled to close before midnight EDT on Saturday, July 31st 2021.

If you are interested in completing Part 2 of the survey but cannot find the recent email, please reach out to NVLDPro@nyspi.columbia.edu.

We hope that this research project will help us learn more about the life course of people who have NVLD.

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The NVLD Project
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