The Epilepsy Therapy Project held the 2012 Epilepsy Pipeline Update Conference from February 2 through February 4 in San Francisco. I attended general public sessions on Saturday afternoon February 4, 2012. On February 3, KQED’s Michael Krasny interviewed a few of the participants, including CURE’s Susan Axelrod pictured below.
The epilepsy movement is still finding its voice. This year the Epilepsy Pipeline Update Conference included the “1st ETP Family Day.” (People with epilepsy are “in the family.”)
Families are important advocates. By including families at conferences, something else happens. Families have a chance to meet other families. Mothers of children with epilepsy can meet each other in the hallway. Fathers and uncles can talk about how their son or nephew Danny enjoyed life until he suddenly died.
Somehow, those of us with epilepsy must remember Danny too. People join our community suddenly and they tend to leave suddenly. We must build stronger connections that last beyond our individual lifetimes.