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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)

1 IN 26 AMERICANS
DEVELOP EPILEPSY

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, meets with medical technology companies, and consults with epilepsy organizations. Below are resources and organizations that the DDF believes provide beneficial information to patients and caregivers of those who suffer from epilepsy. You can find more information on Devices and Technology here.

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

Danny Did Foundation Publications

For Patients and Caregivers:

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, school, hospital, doctor’s office, family, or community.

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.


For Patients, Caregivers and Medical Professionals:

Danny Did Foundation Seizure Safety / SUDEP Info Publication. 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.


For Students and Schools

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) F 2) G 3) I 4) J 5) H 6) C 7) B 8.) A 9) D 10) E]


Additional Resources

For Patients and Caregivers:

Managing Epilepsy & Seizures Infographic from The SUDEP Institute

Alerting Devices: Considering an alert device? Read these five steps to help guide your selection of the system that will work best for you. 

Patient Education Materials on SUDEP: Danny Did co-created materials with the Child Neurology Foundation and the Epilepsy Foundation SUDEP Institute that help to access SUDEP risk level. We encourage a conversation with your neurologist to determine whether the low risk or high risk SUDEP information sheet is most applicable to you or your loved one. These materials are available in both English and Spanish. 

The Ketogenic Diet: My Keto Planner: The ketogenic diet is a high-fat, no sugar, low-carbohydrate diet that is used to manage epilepsy in patients who do not respond to medication. It was designed to mimic the metabolic state of fasting, where the body burns body fat for fuel in the absence of its preferred energy source, carbohydrate. Like devices, this diet is another area of treatment to ask your doctor about. My Keto Planner is a free online resource where where patients and parents can find new recipes and meals for the ketogenic diet, and gain inspiration from other parents who are using the diet. Free registration is required. My Keto Planner is also accessible as a mobile app for added flexibility.

For general information on ketogenic therapies, visit the website of The Charlie Foundation. To watch a video that gives an overview of the diet from Dr. Jeff Buchhalter, click here

Infantile Spasms: Infantile spasms (IS) is a rare seizure disorder that occurs in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month. IS often has a very subtle appearance, so it is difficult for parents to recognize that it is a serious problem. Receiving treatment for IS as early as possible is extremely important. Find more information from the Child Neurology Foundation.   


For Medical Professionals

SUDEP FAQs for doctors and nurses from the Epilepsy Foundation

The SPIKES Strategy pocket guide to talking about difficult topics like SUDEP. Email info@dannydid.org if you'd like copies of this piece mailed to your practice. 


Bereavement Support

The SUDEP Institute - program run by the Epilepsy Foundation - offers a range of support and educational services for families who are living with epilepsy, as well as counseling and support for families who have lost a loved one to epilepsy. For information on bereavement support, visit this webpage, or email tfstanton@dannydid.org. The SUDEP Institute unites leading epilepsy organizations - including the Danny Did Foundation - to promote information sharing and facilitate collaboration around the most common cause of death in epilepsy.

The SUDEP Institute offers a SUDEP hotline that is staffed by professionals who lend crisis support. That number is 800-332-1000.

For families in the United Kingdom, SUDEP Action is a leading advocacy organization that offers support for bereaved families and for those who are living with epilepsy.


Other 

A Babysitter's Guide to Epilepsy: This two-page form outlines important information if you're a babysitter, or if you're a parent of a child with epilepsy who uses babysitters.

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