The Danny Did Foundation has two main goals:

(1) raising awareness of Sudden Unexplained Death in Epilepsy (SUDEP) and strengthening the communication model regarding SUDEP between medical professionals and the families and loved ones of those afflicted by seizures, and

(2) the mainstreaming of medical devices for home-use that serve as alarm systems for seizure activity.

To achieve these goals, the Danny Did Foundation engages physicians and researchers in the fields of neurology and epileptology, meets with medical technology companies, and consults with epilepsy organizations.

Our first thought as we started our journey was that there must be a technology that can reliably sense seizure activity and sound an alarm when such activity occurs during sleep. We were quickly informed that no such technology exists.  Our second thought was that the technology that doesn’t exist is a time-machine that will bring Danny back.  Our third thought was to find and/or develop the technology that will alert when seizure activity occurs during sleep. It didn’t take us long to find the Emfit Movement Monitor.

We contacted the company, we tested the product ourselves, and we decided that doctors need to at least become aware of this technology. So we partnered with the Epilepsy Foundation of Greater Chicago and we started meeting with the heads of the Epilepsy Centers at various hospitals around Chicago. We were warmly received by most doctors with whom we met. We’ve had extensive conversations about our mission and have formed valuable relationships. Most importantly, we have sparked interest in a device that may reliably sense seizure activity while a person is sleeping. Ultimately, the DDF’s goal on the technology and device side of the equation is to bring to the forefront multiple options for those afflicted by seizure disorders to consider in combating what can be a deadly condition.

The other side of our conversations with doctors from various hospitals has centered around SUDEP, or Sudden Unexplained Death in Epilepsy. Why, we are asking, don’t doctors routinely inform the families of those afflicted with seizure disorders about the possibility of death? We have heard a variety of answers, most of which center around talk of statistics and how rarely SUDEP occurs. Well, Danny was that ‘rare’ statistic, and so that argument doesn’t sit with us. We have found, though, that most doctors do want to talk about SUDEP, but are uncertain as to how or when. The Danny Did Foundation has offered to step into this role, along with the Epilepsy Foundation of Greater Chicagoloand. Together, we have created materials that doctors can provide to patients afflicted with seizures and which offer the full range of possible outcomes associated with seizures, including SUDEP. The DDF and the Epilepsy Foundation of Greater Chicago are also offering to serve as outlets to which doctors can steer patients for more information about epilepsy and SUDEP.

Beyond this, our fundraising and personal relationships are allowing us to branch out into other venues. We are committed to using funds to achieve our mission in the most meaningful ways possible. Our intentions include:

1. SUDEP awareness and outreach in the form of educational materials and presentations
2. Sponsorship/participation at conferences, expos, and other events that promote awareness of epilepsy/SUDEP
3. Researching emerging technologies that offer seizure-detection and seizure-alarm devices
4. Assisting developers of the most promising seizure-detection/alarm devices with funding, exposure to neurologists, and the FDA approval process
5. Assistance in providing seizure detection monitors to those who cannot afford them
6. Lobbying to secure insurance coverage of devices that become FDA approved
7. Funding studies that will provide more information on SUDEP related deaths
8. Creating materials that highlight in an engaging manner the issues and facts of epilepsy and SUDEP

We feel that we are just at the beginning of what will certainly be a lifelong journey.