DANNY DID FOUNDATION via Crowdrise
August 20, 2012
Founded by Chicagoans Mike and Mariann Stanton in January of 2010 after their four-year old son Danny died from a seizure while he was sleeping, the Danny Did Foundation (DDF) is dedicated in its mission to prevent deaths caused by seizures.
To achieve our mission, the DDF focuses on two main goals: (1) advancing awareness of Sudden Unexpected Death in Epilepsy (SUDEP) via enhancing the SUDEP communication model between medical professionals and those afflicted by seizures, and (2) the mainstreaming of seizure detection and seizure prediction devices that may assist in preventing deaths caused by seizures.
With three million people in the United States and 50 million people globally afflicted by the neurological disorder of epilepsy, the DDF’s mission to prevent deaths caused by seizures through the direct advancement of information regarding safety issues in epilepsy to both medical professionals and to those who suffer from seizures is as necessary as it is logical. And with an estimated 50,000 annual deaths in the United States alone attributed to the effects of epilepsy, the DDF’s contribution to the discovery, the development, and the distribution of commercially available seizure detection and seizure prediction devices is critical to reducing a death-rate from seizures that is greater than that of those who suffer from breast cancer.
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 epilepsy-related deaths– we believe that there is no such thing as too much prevention.
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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.
Please go and enjoy your life. Danny Did.