Earlier this week Hillary, Mel, and Esmé traveled to Washington DC for an SCN8A conference organized by our partners Wishes for Elliott to learn more about SCN8A research. At the conference we were able to speak with a number of researchers who were new to us as well as some, like Dr. Jack Parent of the University of Michigan and Prof. Ingrid Scheffer of University of Melbourne & Florey Institute, who are active in the PCDH19 Epilepsy community.
And we were also able to meet Dr. Michael Hammer, the geneticist who discovered the SCN8A mutation in is daughter Shay, and other families with children who have SCN8A mutations as well as with other families who have children with SCN8A mutations
Photo by Anne Scherrer
From left to right: Esmé Savoie, Hillary Savoie, Dr. Michael Hammer, Juliann Bradish, Adeline Bradish, Gabi Conecker, Elliott Conecker
Photo by Michael Halpern
Dinner with the researchers before the conference.
5/21/2019 05:21:22 pm
I am head of The Anita Kaufmann Foundation, global sponsor of Purple Day for epilepsy awareness. We are having our 3rd annual Purple Day Disney Event in Orlando. The previous attendees said they would like an Epilepsy Expo with the latest information in the epilepsy world. So... we are having an Expo. Please email me the best address to send all of the details of the Expo. Thank you very much.
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