Episode 17: Ed’s Life With Haley (age 18)

In this latest episode we introduce you to our children’s grandparents and welcome a well-known CDKL5 grandpa, Ed Fennell. Ed shares some awesome stories about his granddaughter, Haley, particularly about how she communicates and takes the world in. She is a spitfire! Ed has always been her champion and is passionate about finding a way to bring out her voice so that she is more understood in the world.

Ed also shares with us about the AI technology he is trying to advance, exploring how the skills of engineering students, the knowledge of caregivers, and this ever-expanding technology may be able to develop a system to enhance communication for kids like ours. It’s fascinating stuff and if you have questions for Ed, we can get you in touch!

SHOW NOTES

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MENTIONED IN THE EPISODE:

Voice4PIMD Website

Haley and Poppy Website

Ed's speech at the CDKL5 Patient-Focused Drug Development meeting (2:41:20 )