Epilepsy Blog Relay: Danny Did Foundation on SUDEP|

1594245984428 – Living Well With Epilepsy — Tom Stanton President Danny Did Foundation

Raising awareness of SUDEP

The Danny Did Foundation (DDF) was founded by Chicagoans Mike and Mariann Stanton in 2010 after the death of their four-year-old son Danny to Sudden Unexpected Death in Epilepsy (SUDEP). Since that time the Foundation has worked tirelessly 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 SUDEP education and disclosure between medical professionals and families afflicted by seizures
Enhancing the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths

What is SUDEP

Sudden Unexpected Death in Epilepsy (SUDEP) is when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. In most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are:

The person has epilepsy, which is defined as recurrent unprovoked seizures.
The person died unexpectedly while in a reasonable state of health.
The death occurred suddenly and during normal activity (often during sleep).
An obvious medical cause of death could not be determined at autopsy.
The death was not the direct result of status epilepticus.

Epilepsy impacts more than 3.4 million people in the United States – more people than ever before, per the CDC – and at least 65 million people worldwide. Thousands of U.S. deaths occur annually from SUDEP, and estimated 50,000 deaths occur worldwide each year due to SUDEP, status epilepticus (prolonged seizures), and other seizure-related causes such as drowning and other accidents.

Journal article on SUDEP

Epilepsy Device Grants

The Foundation provides resources and immediate support, often related to education or funding for seizure detection devices. To date, DDF has provided grants to enable seizure alerting devices across all 50 states and 15 countries. If you are seeking funds to help with the cost of a device to help manage your epilepsy, review and research the product options listed on their website, and then complete their application. Note: the DDF does not provide funding support for every system.

Danny Did Foundation Grant Application: click here

Remember that a submission of an application does not equal a guarantee of funding. If you have questions, contact us at kgaughan@dannydid.org.

Epilepsy Awareness Day at DisneyLand Grants

Each year the Danny Did Foundation offers a lottery for Epilepsy Awareness Day at DisneyLand grants to families that need financial assistance to attend. Please visit https://www.dannydid.org to watch for more information.

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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