You may already know that President Obama’s close adviser, David Axelrod, has a daughter with epilepsy. This weekend’s Parade Magazine interviewed his wife Susan about their experiences with their now 27-year-old daughter, Lauren, and their work on behalf of epilepsy prevention and treatment.
Susan began to meet other parents living through similar hells. They agreed that no federal agency or private foundation was acting with the sense of urgency they felt, leaving 3 million American families to suffer in near-silence. In 1998, Susan and a few other mothers founded a nonprofit organization to increase public awareness of the realities of epilepsy and to raise money for research. They named it after the one thing no one offered them: CURE--Citizens United for Research in Epilepsy.
The article is a compelling read. For another look at epilepsy and how it affects a family, I recommend Epileptic, by David B. A graphic novel by a French cartoonist whose older brother has severe epilepsy, the book is both an exploration of the author’s artistic awakening and the toll that the disorder can wreak. The drawings are incredible.
Thanks to Patricia E. Bauer’s Disability News blog for the tip.