SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections - Creating Better Tools, Resources and Research for the Most Severely Affected Families with Gabi Conecker

Once Upon A Gene · Jun 8, 2023 · 39m

ONCE UPON A GENE - EPISODE 190

SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections - Creating Better Tools, Resources and Research for the Most Severely Affected Families with Gabi Conecker

Gabi Conecker is an incredible advocate who has worked in the rare disease space for over 10 years. She's accomplished a lot, all while caring for her for her son Elliot with SCN8A and a severe variant of epilepsy.

EPISODE HIGHLIGHTS

Where does your rare disease journey begin?

My son Elliot was diagnosed with SCN8A in 2014, and there were only about ten known cases in the world. We founded Wishes…