Founded by Chicagoans Mike and Mariann Stanton in January 2010 after the death of their four-year-old son Danny, the Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths. We view these devices as complimentary to medicinal, surgical and dietary measures that are used to treat seizures.
To achieve our goals, the DDF engages physicians and researchers in the fields of neurology and epileptology; we collaborate with medical technology companies; we consult with epilepsy organizations, and we interact with all those affected by Danny’s story. We ask doctors to talk about SUDEP, and we offer ourselves as an outlet to which doctors can steer patients. We create informational pieces about safety in epilepsy in general and SUDEP in particular. We pursue the latest seizure detection and seizure prediction technologies, and once identified as viable and worthwhile instruments, we work to get these products approved by the United States Food and Drug Administration and then covered by insurance companies. We view these devices as complimentary to medicinal, surgical, and dietary measures that are used to treat seizures, and –with SUDEP accounting from an estimated 20 percent of seizure-related deaths– we believe that there is no such thing as too much prevention.
On Danny’s first day of preschool, he told his teacher “I just want to learn.” Like Danny, we also want to learn. We want to know why a worldwide medical condition is so widely misunderstood by the general public and how it has remained such a riddle to the global medical community. And because epilepsy has taken Danny from us, we will not stop questioning until we know the answer, and to this end we will engage all – from grammar school kids to internationally recognized epilepsy experts– in our effort to prevent another death caused by a seizure.