Spotlight Partner Edition: Danny Did Foundation

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Learn more about our partner, the Danny Did Foundation, and how they are raising awareness for Sudden Unexpected Death in Epilepsy (SUDEP). Questions were answered by Tom Stanton.

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Q: When and why was the Danny Did Foundation started?
A:  The Danny Did Foundation was founded by Chicago parents Mike and Mariann Stanton in 2010 after the sudden death of their four-year-old son Danny. They started Danny Did because they wanted other families to avoid their experience of losing a loved one. The name of the Danny Did Foundation originates from the last line of Danny Stanton’s obituary, written by his dad: “Please go and enjoy your life. Danny did.”

Q: What is Danny Did’s mission?
A: Danny Did Foundation’s primary mission is to prevent deaths caused by seizures. Our Foundation advances public awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), works to improve communication about SUDEP between medical professionals and families impacted by seizures, and advocates for the mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths. Epilepsy affects nearly 3 million people in the United States and 65 million people worldwide. One in 26 Americans will develop epilepsy during their lifetime. But what few people understand, including many people impacted by the disorder, is that seizures can be fatal. More people die as a result of seizures than from fires and sudden infant death syndrome (SIDS) combined. The causes of death can vary and include drowning, other accidents and status epilepticus (prolonged seizures). In addition, thousands of deaths occur annually from SUDEP, a fact that is little known and too rarely addressed in public and in medical circles. 

Q: What is the one thing you wish everyone knew about SUDEP?
A: Simply that SUDEP is a risk that anyone who has epilepsy needs to be aware of. Other risks that come with epilepsy – like the risks related to swimming or bathing, the risk of head trauma, the risk of prolong seizures, or the risk of injury from falling or driving during a seizure – are typically discussed between a doctor and a patient. The communication about SUDEP, though, is generally pretty poor. If a person with epilepsy doesn’t know every possible outcome, they can’t take steps to ensure their best care. That can be dangerous, and people with epilepsy deserve better.

Q: What is one thing that people can do to help or support a loved one or friend with epilepsy?
A: Knowing how to respond if you see someone having a seizure can be life-changing for that person in need. The basic steps are: clear the space around the person; cushion their head; gently roll them on their side; and stay calm and let them know you are there to help. As a general rule, if a seizure lasts for more than 5 minutes, you should call 9-1-1.

Q: How do you see RapidSOS technology helping Danny Did’s mission?
A: A lot of people who face epilepsy have regular interaction with 9-1-1. Any means to make that experience faster and more comprehensive is going to make a positive difference. For certain types of seizures, getting help quickly is really important. Seconds and minutes matter. We want people to know about the Haven app as another tool in their toolkit of resources. The opportunity to access this resource for free through our Danny Did partnership with RapidSOS is a big added bonus.
 
This Sunday, October 23, 2016, is SUDEP Awareness Day. Please share this post with your friends and family to raise awareness!

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