When we started the Danny Did Foundation, we set three main goals: nurture the Foundation as if it were Danny himself, lead by example, and advance our objective via an ethos that transcends our mission statement. Through the pursuit of the first two, the third outlook has contoured Danny Did’s profile as a worldwide partner in the expansion of epilepsy awareness.
The idea that Danny Did should be more than its mission statement to prevent deaths caused by seizures was stuck in our craw from day one. What it meant 14 years ago and what it means today is uniform: we did not know about epilepsy or seizures or Sudden Unexpected Death in Epilepsy (SUDEP) until after Danny died, at which time we discovered many established epilepsy-focused organizations that had been dug in for decades. So frameworks were there, but what about a community? Where was the marketing and advertisement necessary to build the body of people committed to each others’ welfare? With the huge number of people afflicted by epilepsy, why didn’t we know that we had somewhere to turn? There had to be more.
We lived in Chicago —middle America— so geographically we were a sweet spot. We lived in proximity to renowned hospitals and endowed research centers, so we were a prime audience for the message of the magnitude of the effect of epilepsy on families. And that’s what struck us most in the aftermath of Danny’s death: that we didn’t know. Muscle and flesh needed to be added to the existing skeletons to vitalize their potency.
Billboards on expressways and at airports, television spots, bus wraps, radio advertisements, private industry partnerships, event sponsorships, marathon teams, tee shirts, sweatshirts, hats, lapel pins…it was all on the table from the beginning. The idea to operate with a for-profit mentality was all that made sense. Blur the perceptual line, we thought, between the traditional function and administration of a charitable institution and what is necessary to maximize performance and production. In other words, just make it happen.
Danny did make it happen. With over a decade of work in the books, his little face and his sweet smile continue to pilot the Danny Did Foundation’s progress in providing hands-on assistance to families, in seeking out seizure detection and prediction devices, in connecting with the medical community and in promoting large-scale communication pathways between epilepsy patients and doctors. It’s an everyday affair, and it’s Danny Did’s purpose to let people know that we are here.
As for us —Danny’s family— we have been ripened by depression, matured by energy and strengthened by time. Stashed away in the 14 years since Danny died are troves of birthdays and anniversaries and graduations and holidays. Life has been challenging and it has been interesting, and our relationships with each other and with Daniel are like everyone else’s family ties: we try to keep the fires burning and the connections strong, and are successful some of the time.
That essential extra layer that was the ‘more’ of Danny Did’s essence necessary to captivate an audience of all economic and demographic communities touched by epilepsy —and also to reach those who are only passers-by to our cause— turned out to be Danny himself, and, specifically, to the mantra of his legacy: Enjoy Your Life.
Everyone can get under that umbrella and walk to that beat, and everyone is welcome to be a part of the Danny Did Foundation in our pursuit of preventing deaths caused by seizures.
With gratitude and peace,
Mike and Mariann Stanton