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 collaborates with epilepsy organizations. Below are resources and organizations that provide beneficial information to patients and caregivers of those who suffer from epilepsy, and for those who have lost a loved one.
You can find more information about Devices and Technology here.
About one-third of people who face epilepsy do not have their seizures controlled by medication or other therapies. For those patients especially, it is important to seek treatment from an epilepsy specialist, called an epileptologist. You can search for a specialist and 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. To access this brochure in Spanish, click here.
Danny Did Foundation Addressing A Seizure: Steps To Take. A simple blueprint on how to respond to a seizure, useful for parents, family members, even colleagues. Use the PDF to post and share.
Danny Did Addressing A Seizure: Steps To Take, Student Version. A simple blueprint for students on how to respond to a seizure. Use the PDF for classroom and school presentations.
Danny Did Grant Program: An overview of our process for providing funding for alerting devices. To access this brochure in Spanish, click here.
Epilepsy Medications: View this list of seizure medications, also known as antiepileptic drugs (AEDs).
Epilepsy Syndromes: There are many specific syndromes that fall under the umbrella of epilepsy. You can view a list of those syndromes here.
For Patients, Caregivers and Medical Professionals:
Danny Did Foundation: Epilepsy, Knowing Your Risks. This brochure outlines some of the most important safety areas of concern that those with epilepsy are likely to have, including the risk of SUDEP. To access this brochure in Spanish, click here.
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.
Partners Against Mortality in Epilepsy (PAME): Danny Did is a founding member of this coalition of bereaved families, advocates, clinicians, researchers, public health officials and people living with epilepsy. These stakeholders share a common goal of improving our understanding of and working to prevent epilepsy-related forms of mortality, including suicide, accidents, and status epilepticus, and with a strong focus on Sudden Unexpected Death in Epilepsy (SUDEP). To learn more about PAME and its activities, click here.
Preventing Epilepsy Deaths: A Toolkit for Clinicians: Epilepsy is a neurological disease that doubles or triples the risk of a person dying prematurely. That's why it is critical that we start the conversation about how to take preventative measures to help decrease the risk whenever possible. Danny Did partnered with nearly 20 different organizations and over 50 individuals in the epilepsy community to create a new toolkit for caregivers and clinicians. The goal of this toolkit is to educate individuals about epilepsy and address epilepsy mortality risk factors. Within this toolkit, there is a handout specifically for caregivers and family members with helpful information about steps to decrease your risk. Click here to share our Danny Did Mortality Toolkit brochure with your healthcare providers.
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:
"Be SUDEP Aware" Infographic from Partners Against Mortality in Epilepsy (PAME)
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. Watch this 2-minute video to see and learn about IS. For more information, visit the Child Neurology Foundation.
For Medical Professionals:
Preventing Epilepsy Deaths: A Clinician Toolkit: The goal of the behavior change toolkit is to educate clinicians on how to talk with families and people living with epilepsy about addressing epilepsy mortality risk factors.
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. We urge you to talk about SUDEP!
American Academy of Pediatrics webinar on the topic of epilepsy testing, and communication around the risk of SUDEP.
Trainings For Medical Students: Strengthen & Enhance Epilepsy Knowledge (SEEK): The National Coordinating Center for Epilepsy developed the SEEK Training for Medical Residents as a free resource to help build knowledge and capacity and encourage discussion among medical residents who care for children with epilepsy. The SEEK trainings ready-to-use teaching tools for medical residents seeking to increase their knowledge and expertise regarding epilepsy care for children and youth with epilepsy. The module topics includes SUDEP, transitions of care & rescue medications.
The 2019 International League Against Epilepsy (ILAE) educational curriculum for epilepsy, featuring three levels of professional expertise: entry level, proficiency and advance proficiency. The main ILAE website is here.
Child Health Improvement through Computer Automation (CHICA) initiative: Partnering with the Child Neurology Foundation, Digital Health Solutions, Inc., Greenwich Biosciences and The SUDEP Institute, Danny Did contributed to a pilot project that used a high-tech tool to automatically generate SUDEP risk screening during routine primary pediatric care visits. Preliminary results showed that after starting CHICA with the SUDEP module, the number of caregivers who reported discussing SUDEP with their doctor more than doubled from 21% to 46%. Learn more about CHICA and its future expansion here.
American Epilepsy Society / American Academy of Neurology Guideline on SUDEP, released in 2017.
American Epilepsy Society Position Statement on SUDEP Counseling, released in October 2019.
Bereavement Support
Grief in Epilepsy: Learning from Loss. This webinar from March 2021 explored the factors that make epilepsy-related deaths unique from other disease states. Hosted by Partners Against Mortality in Epilepsy (PAME) and moderated by our DDF executive director, this webinar features a panel of parents who have lost a child, as well as tips on how to best support them.
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.