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Nonprofit Overview

Causes: Health

Mission: Founded in january 2010 by chicagoans mike and mariann stanton after the sudden unexplained death in epilepsy (sudep) of their four-year-old son danny, the danny did foundation is dedicated in its mission to prevent deaths caused by seizures. With more than three million people facing the challenges of epilepsy in the u. S. -and more than 50 million people affected by epilepsy worldwide-the issue of aggressively addressing sudep is as urgent as it is logical.

Programs: The danny did foundation holds as its main goals 1) advancing awareness of epilepsy and sudden unexpected death in epilepsy (sudep), 2) enhancing the sudep communication model between medical professionals and families who are impacted by seizures, and 3) the mainstreaming of devices and technologies that may assist in preventing deaths caused by seizures. Danny did achieved these goals by subsidizing the cost of the emfit movement monitor for 69 families in need, subsidizing the cost of the smartwatch device for 29 families in need, subsidizing the cost of sami alert devices for 16 families in need; and counseling hundreds of additional families regarding these options. Danny did also reached its goals via the distribution of its seizure safety and sudep brochures to hospitals, doctors, advocates and families nationwide, in both english and spanish; by using print ads, radio ads, billboards and social media to advance awareness and education; by sponsoring sudep-related events; and by presenting at conferences, schools and meetings across the country to spread understanding and tolerance for seizures and people with epilepsy. Danny did also funded scholarships for four families to attend the epilepsy educational expo and awareness day at disneyland.

Community Stories

3 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

The Danny Did Foundation is a professionally run organization. The Foundation is pro-active in seeking support and finding ways to help families and patients of epilepsy. Ending deaths caused by seizure requires movement and forward thinking -- all shown by this foundation. The Foundation made an immediate impact by donating movement monitors to families in need. Today, more than 40 monitors have been distributed to families around the world and our impact in the medical world continues to grow.

1

Board Member

Rating: 5

The DDF has opened my eyes to a huge issue affecting thousands of people that have seizures. Its website provides a number of powerful and compelling personal testimonials from parents that highlight the lack of information provided by doctors. I learned that doctors are not advising seizure patients that a seizure can result in death. DDF has been working tirelessly to raise awareness on this issue by reaching families affected by seizures and sharing, firsthand, the harsh reality of seizures. The Foundation has also identified a new technology, the Emfit monitor. This monitor sounds an alarm when a person experiences a seizure while sleeping. It is heart wrenching that this alarm isn't prescribed to every patient that has experienced a seizure while sleeping. You have to applaud the Foundation for purchasing almost 50 Emfit monitors over the last year for families that are affected by seizures. The DDF website is filled with notes thanking the Foundation for informing them about Sudden Unexplained Death in Epilepsy and the Emfit monitor. The Foundation is doing what we hope will one day will be done by every doctor; inform seizure patients that death can result from seizures and prescribe a seizure monitor to help prevent these tradgedies.

1

Board Member

Rating: 5

I was recently added as a new board member following my involvement with the organization over the past 18 months. The Danny Did Foundation is a newly formed oganization whose mission is to help spread the word about SUDEP and help prevent deaths caused by siezures. I became involved because my friend lost her 4 year old child to SUDEP. Although the loss of Danny certainly hit close to home, I also realized this could have happened to anyone. As a mother, my friend did everything Danny's doctors asked. The problem is that they knew more than they shared with her. Many of us know others who deal with seizures. I know a number of people including my nephew, a co-worker and another friends son. Since I have been involved with DDF, I have heard many personal stories about their experiencs with seizures. It is significantly more common that I ever realized. Do you know that more people die from SUDEP than from breast Cancer? We need awareness and understanding. We need doctors speaking openly and candidly about SUDEP. We need devices to monitor seizures. DANNY DID is helping to accomplish all of these things. I am proud to serve as a board member for this organization! The people behind the foundation are extremly motivated, dedicated and are people who will make things happen. I wish I could give people back the loved ones that were taken by SUDEP. Since that's not posible, I plan to spread the message of The Danny Did Foundation to the best of my abilites with the hope that we can help others.