Wife of key Obama aide shares family’s journey with epilepsy
When 27-year-old Lauren Axelrod was diagnosed with epilepsy as an infant, her parents Susan and David were given scant information about the condition that was triggering dozens of brain-damaging seizures a day. They didn’t know the seizures would resist all efforts to control them, that available drugs caused devastating side effects, and that there was little ongoing research to help the 50 million people worldwide who share Lauren’s diagnosis.
In 1998, Susan Axelrod joined with other mothers to form the nonprofit organization Citizens United for Research in Epilepsy (CURE). Over the past decade, the group has raised $9 million for research and has changed the scientific dialogue about epilepsy.
David Axelrod was the chief strategist of the Obama campaign, and now serves as senior White House adviser.
“Complete freedom from seizures — without side effects — is what we want,” Susan says. “It’s too late for us, so we committed ourselves to the hope that we can protect future generations from having their lives defined and devastated by this disorder.”
Related stories from Parade about “heroic parents”:
- If the schools won’t help us, we have to help ourselves — Parents start a school for students with neurobiological and socialization disorders.
- Fighting a rare illness together — Parents start a foundation for research into Barth syndrome.
- Saving tiny hearts is what we have to do — Parents organize to fund research into congenital heart defects.
(Photo from Parade magazine)