Helpful Resources

In search of information pertinent to addressing epilepsy, SUDEP and its related issues, the Danny Did Foundation engages physicians and researchers in the fields of neurology and epileptology, we meet with medical technology companies, and we consult with epilepsy organizations. Below are writings and organizations that the DDF believes provide beneficial information to patients and caregivers of those who suffer from seizure disorders. Find more information on Devices and Technology here.

You can locate the epilepsy center nearest to you by clicking here.

Danny Did Foundation Publications

• Danny Did Foundation Seizure Safety / SUDEP Info Publication. Jointly published by the Danny Did Foundation and the Epilepsy Foundation of Greater Chicago, this brochure outlines some of the most important areas of concern that those with epilepsy are likely to have. The printed form of this publication is distributed to hospitals, epilepsy centers, pediatricians offices, and epilepsy organizations across the United States and beyond. To request copies of this brochure for your events, group, hospital, doctor’s office, family, or community, please email Mary Duffy at mduffy@dannydid.org. To see this brochure in Spanish, click here.
  
• Danny Did Foundation Trifold Brochure. This informational brochure spells out who we are and what we do. Please contact Mary Duffy at mduffy@dannydid.org to request copies of this brochure for your events, group, hospital, doctor’s office, family, or community.
• Danny Did Seizure Safety Quiz: Share with your classroom or a youth group to spread basic but critical understanding about seizures and epilepsy. [The answer key is: 1) D 2) E  3) G  4) H  5) F  6) C  7) B  8.) A  9) D  10) E]
  
• Danny Did Foundation Addressing A Seizure: Steps To Take. A simple, helpful blueprint on how to respond to a seizure, something we wish was made available to us. Use the PDF to post and share, but here’s a quick guide on how to respond to a seizure:
  

1. Note the time the seizure begins, the duration of the seizure matters to first responders and doctors.
2. Protect the person seizing by clearing the area around them and gently holding them to prevent them from hitting any sharp or dangerous objects.
   
3. Cushion the person’s head.
4. Roll the person on their side to prevent choking, and ensure their airway is clear.
5. Don’t panic. Stay calm. You can’t stop the seizure. The person seizing needs your help. You are the responder, not the victim.
   
6. If the seizure persists for more than 5 minutes, or if you’re concerned for the person’s safety, call 9-1-1.

At the Neurologist/Epileptologist’s Office: Questions to Ask:

1. Ask if a person can seize while sleeping.
2. Ask if a device for home use exists that can alert a caregiver when seizure activity occurs.
3. Ask if a seizure can be fatal.
4. Ask if EEGs should be performed more than once every six months.
5. Ask about MRIs, both with and without contrast.
6. Ask the doctor to discuss SUDEP and other risks related to epilepsy.

Useful Articles and Papers

• Parent testimonials about SUDEP given before the Institute of Medicine panel ahead of its 2012 Report, Epilepsy Across the Spectrum
• A Sudden, Scary Side to Epilepsy, October 2012
• Epilepsy Currents: SUDEP, What Are The Risk Factors? August 2012
• Dr. Orrin Devinsky: Strategies For the Prevention of SUDEP, August 2012
• Harvard Study: Predicting Sudden Death From Epilepsy, May 2012
• Institute of Medicine Report on Epilepsy, March 2012
• Epilepsia: Risks Involved With SUDEP, February 2012
• The Role of Anti-Depressants in Reducing SUDEP, Feb. 8, 2012
• Unmasking Silent Killer in Epilepsy, New York Times, July 26, 2010.
• Jon Meacham: Epilepsy In America: What Needs To Be Done, from Newsweek magazine.
• Dr. Stephan Schuele: Talking about SUDEP is First Step to Understanding It, from Epilepsy Connections magazine courtesy of the Epilepsy Foundation of Greater Chicago.
• Morgan Murphy: Epilepsy’s Hidden Toll, from Epilepsy Connections magazine courtesy of the Epilepsy Foundation of Greater Chicago.
• Sudden Unexpected Death in Epilepsy: A Global Conversation, reprinted with the permission of Epilepsy Australia – the national coalition of Australian epilepsy associations and Epilepsy Bereaved UK (a free book).
  
• Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy, from Epilepsia.
• What Can be Done to Reduce the Risk of SUDEP?, from Epilepsy & Behavior.
• Jeffrey Noebels, MD, PhD and Alica Goldman, MD, PhD, Baylor College of Medicine, Houston: A Preventable Cause of Sudden Unexpected Death in Epilepsy (SUDEP) Finally is Established.

 Research

• To learn more about opportunities specific to SUDEP genetic research, click here.
• FACES research initiatives at NYU Langone Medical Center 
• North American SUDEP Registry Project