Inclusion Celebration Shabbat Smith Service

Please join us for Inclusion Celebration Shabbat with Guest Speaker Gabi Conecker.

Gabi Conecker, MPH is mother to 11 year old Elliott, who has a severe form of SCN8A-DEE. She is Executive Director and Co-Founder of Decoding Development Epilepsies, which houses a number of collaborative efforts aimed at improving care, quality of life and treatments for those with rare Epilepsies. In 2014, when confronted with a diagnosis that came with no answers for her child, she co-founded Wishes for Elliott to advance research into her son’s newly discovered genetic disorder. Working collaboratively, she joined efforts with other advocates to transition this work into the International SCN8A Alliance, which works globally to coordinate efforts in order to better understand and treat SCN8A disorders. Noting a gap in support and education for families like hers, who have children severely affected by developmental and epileptic encephalopathies (DEEs), she also co-founded DEE-P Connections – a partnership of 40+ patient advocacy groups working to empower caregivers with critical information and improve outcomes for those most severely affected by DEEs. One of the most exciting research efforts of DEE-P Connections is The Inchstone Project, an effort to advance tools able to capture the small but cherished “inchstones,” not milestones, of those most severely affected in both clinical care and relatively short clinical trials. She is also co-Founder of the Epilepsies Action Network, a collaborative effort to increase the understanding of and federal funding for the epilepsies on the Hill. If you would like to hear more, here is a blog she crafted about her journey to advocacy.