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Review for Danny Did Foundation, Chicago, IL, USA

Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Talking with families that are affected by seizures and referring them to DDF as a valuable resource.

If I had to make changes to this organization, I would...

Continue to raise awareness of SUDEP.

Role:  Board Member & I am the treasurer for DDF.