DANNY DID FOUNDATION

The Foundation works to advance public awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), strives to improve communication about SUDEP between medical professionals and families impacted by seizures.
We raise epilepsy and SUDEP awareness through public outreach including radio PSAs, Billboards, school visits and social media. We educate on SUDEP by speaking, exhibiting and/or hosting conferences attended by researchers, neurologists, nurses, medical examiners and patients.

After Danny died, his family was determined to help other families avoid the treatment gaps that they experienced. One key gap was information about and access to monitoring devices that alert caretakers to seizure activity. To help protect kids who have epilepsy, and to help prevent future seizure-related deaths, we created an Seizure Device Subsidy Program. Alerting devices provide a parent the advantage of early intervention when a seizure occurs for their child. Devices are often underutilized by patients, or unknown as a resource. The majority of these devices are not covered by medical insurance. This lack of coverage is an access impediment for low-income families, as these systems typically retail for $500-$1,500, an expense that is difficult to meet when it falls atop other expenses such as medication, hospital stays, and travel to medical appointments.

The Danny Did Foundation believes that a global problem such as epilepsy deserves the attention of all of the globe's inhabitants. From grammar school students to nationally recognized epilepsy experts, we engage all with the knowledge that any person could discover answers to urgent questions in epilepsy.

Danny Did is a partner member of The SUDEP Institute, the North American SUDEP Registry, the Partners Against Mortality in Epilepsy conference, and the Centers for SUDEP Research consortium. We utilize this collaborations to move our goals ahead.

Danny Did is lead by our Co-Founders and has a strong, diverse and active Board of Directors. Danny Did is a partner member of The SUDEP Institute, the North American SUDEP Registry, the Partners Against Mortality in Epilepsy conference, and the Centers for SUDEP Research consortium.
Danny Did serves families all across the United States and has supporters in every state. We have an Ambassadors program in nineteen states. We have a Young Professionals Board in Chicago with satellite members in NY and CA. We also have Student Ambassadors in High Schools and Universities throughout the Midwest.

Since 2010, our signature seizure alert grant program has resulted in more than 1,200 grants to families spanning all 50 states and 11 countries. This program engenders an immediate impact, offering added safety for epilepsy patients, and peace of mind for their caregivers.


COMMUNICATIONS & AWARENESS:

* Our awareness programs have included both digital and traditional billboard messaging in greater Chicagoland, including a dedicated billboard campaign that is ongoing at O'Hare International Airport.

*We produce public service announcements annually, which have aired on multiple radio stations in both greater Chicago and greater Boston.

*On average, we produce more than 1,500 social media posts, featuring content on epilepsy, seizures and SUDEP awareness;

*On average, we distribute more than 55 e-newsletters annually, focused on epilepsy awareness;

*On average, we secure 15-20 unpaid media touches annually;

*We participate in 20-25 speaking and educational events each year.


ADVOCACY & PARTNERSHIPS:

*We have had leadership roles within advocacy partnerships, including – Partners Against Mortality in Epilepsy (PAME), the SUDEP Institute, the Epilepsy Leadership Council, Young Irish Fellowship Club of Chicago; the Northwestern University Dance Marathon, the Child Neurology Foundation, the Keep On Keeping On Foundation, Epilepsy Foundation of Greater Chicago, Epilepsy Awareness Day at Disneyland;

*We partner with research coalitions including the North American SUDEP Registry (NASR) and the Center for SUDEP Research (CSR);

*Annually, we grow participation in the DDF Ambassador programs via our parent, college and high school factions;

*We have expanded membership of the DDF Young Professionals board each year.


FUTURE GOALS

*Increase funding for our device grant program to reach 15 percent more families annually;

*Execute four large scale public awareness campaigns each year;

*Expand SUDEP education for medical professionals beyond epileptologists, to reach more general neurologists and general pediatricians.