About Us
About Us
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Upcoming Events:
Upcoming Events:
Kayven's Helping Hands: Celebrate Kayven
May 30th 2026 6:00PM-8:00PM CT
Field Station: Dinosaur Adventure Park, Derby, KS
Nathan’s Memorial is a space created in loving memory of a bright, joyful boy whose life continues to inspire purpose, awareness, and compassion. In his memory, this space was created to raise awareness about epilepsy and SUDEP, so that other families may be better informed, supported, and protected. Nathan’s legacy lives on through every life touched by this mission—through awareness, through compassion, and through hope.
Through Nathan’s story, we aim to bring light to a condition that often goes unseen, while honoring his spirit by advocating for awareness, safety, and understanding. Whether you are a parent, caregiver, or someone seeking knowledge, this space offers guidance, support, and hope.
Nathan was a bright light—full of joy, laughter, and a spirit that could lift anyone around him. He had a smile that was contagious and a personality that made people feel instantly at ease. Whether he was being playful, curious, or simply enjoying the moment, Nathan had a way of turning ordinary days into something special.
He was deeply loved by his family and all who knew him. His energy, kindness, and innocence left a lasting imprint that will never fade. Nathan’s life, though far too short, continues to inspire love, strength, and purpose.
He will always be remembered, always be loved, and never be forgotten.
-Amber, Nathan's Mom💜
Epilepsy and SUDEP
Epilepsy and SUDEP
Epilepsy is the fourth most common neurological disorder in the world. If you have epilepsy, surges of electrical activity in your brain can cause recurring seizures.
SUDEP stands for Sudden Unexpected Death in Epilepsy. Sadly, it is one, among range of ways in which epilepsy can result in early death. A case of SUDEP applies to the sudden death in someone known to have epilepsy, in the absence of an obvious cause for the death. Although most incidents of SUDEP are presumed to occur after a seizure, a seizure at the time of death is not a requirement for diagnosis of SUDEP.
According to the National Institutes of Health, SUDEP is the most common epilepsy-related cause of death. A discussion with your doctor to determine where you or your loved one fall on the risk spectrum is very important
Seizure Alert Dogs
Seizure Alert Dogs
Seizure Alert and Response Dogs
Alert dogs may predict seizures minutes or hours before they happen, often through scent or behavior changes. Response dogs are trained to act during or after a seizure, such as bringing medication or barking for help.
Specially trained service dogs are tools that people with epilepsy can use to live a safer, more independent life. Service dogs can also increase self-confidence because of the increased feeling of safety. All of this can help with overall quality of life.
Seizure response dogs can be wonderful service dogs for people living with epilepsy. JoshProvides does not breed or train service dogs but provides funding for seizure response training only.
Other Organizations:
Canine Assistants http://canineassistants.org/our-service-dogs/
Eyes, Ears, Nose, and Paws
Susquehanna Service Dogs
https://www.khs.org/what-we-do/assistance-dogs/
Pawsitive for Heros
https://pawsitiveforheroes.org/
To transform lives and strengthen communities through partnerships with custom-trained working dogs.
The Chelsea Hutchison Foundation is a leader in providing grants for seizure response dogs and in placing monitoring equipment in the home, When formed in 2009, The Chelsea Hutchison Foundation was the first SUDEP/Epilepsy organization in the United States to provide grants for seizure response dogs, and continues today to provide the highest level of funding amongst other organizations.
https://chelseahutchisonfoundation.org/
As a leading authority in medical alert assistance dogs, Medical Mutts is dedicated to training rescued dogs to be service dogs and to promoting collaboration between dogs and people through science, education, and ethical training.
Seizure Alert and Detection Devices
Seizure Alert and Detection Devices
The Emfit MM™, Movement Monitor is a patented and clinically tested nighttime monitoring system for quickly detecting and alerting to abnormal, repetitive, convulsive movements. This system is easy-to-install and has no body contact attached to the individual that would potentially interfere with peaceful sleep. The Emfit MM consists of two main components: a flexible, ultra-thin under mattress bed sensor, and a bed-side monitor with embedded software. Developed and made in Finland and classified as an Epilepsy seizure alarm and medical device in Europe, the Emfit MM™ Movement Monitor is available worldwide. https://www.epiusa.net/
SAMi is a wearable-free nighttime movement monitor appropriate for all ages. It was purpose built for parents, caregivers and individuals that need to watch carefully for abnormal movement at night without compromising their sleep or their child’s safety. The device can be configured to alert to both rhythmic (repetitive) and non-rhythmic movement in the face, extremities, or full body movements, even when someone is under bed covers or in a crib. SAMi is customizable so you can choose how much motion SAMi should look for, and how long to wait until setting off the alarm. The device can also automatically record HD video/audio of any motion throughout the night, which can be reviewed or shared with a doctor.
When abnormal movement is detected, the SAMi app triggers the alarm and displays live video + audio, so the caregiver can determine if action is needed. The device works in complete darkness and does not require any internet connection to function. The SAMi app is free to download, and the maintenance and new features are all at no cost.
Made by Empatica, this system features a wearable watch and smartphone application all-in-one solution for detecting possible generalized tonic-clonic seizures and monitoring epilepsy. Their EpiMonitor Subscription package includes these features; Seizure Alerts, Seizure Diary, Sensing Precisions (to adjust configuration settings based on your activities), Alert Location and on their “Plus” Subscription only: Manual Alerts, Sleep and Activity Tracking, Diary PDF Exports for caregivers or doctors. This product is FDA-cleared for adults and children ages 6 and up, and requires a prescription from your doctor. The system is designed to have 7 days of battery life, and requires the person wearing the watch to have a compatible smartphone, which they must keep within approximately 25 feet.
Epilepsy Management Apps
Epilepsy Management Apps
CAPTUREPROOF is a visual health record that allows patients and healthcare providers to securely share photos and videos as part of their medical communication and collaboration. After downloading this free app, you can send videos or photos of seizure activity with your doctor at any time, offering the potential for faster diagnosis and treatment. Caretakers can also use this app simply to keep their own visual seizure diary. The app also saves all visual records so that it is possible to track the progression of seizure activity over time. To learn more about CAPTUREPROOF, visit their website, or call (415) 770-2020 to have someone walk you through how to set up your account.
Created by parents who have a son with epilepsy, Seizure Tracker is designed to provide patients, doctors and researchers with free comprehensive tools to help understand relationships between seizure activity and anti-epileptic medications. Patients can create personalized reports of logged seizure activity and medication history that can be shared with their medical team. The mobile app version of this system allows users to record seizure activity as it happens with the Seizure Tracker. Having a seizure recorder handy can improve the accuracy of the data you collect and help to inform better treatment decisions. Note, this system is not designed to alert to seizure activity, but only to improve tracking.
A platform that connects families and caregivers for effective epilepsy safety and management. EpiPal is designed to detect seizures, send alerts for epilepsy-related emergencies, journal together to discover new insights as a team, monitor medication adherence, and stay connected with everyone in your support group.
EpiPal can be purchased and downloaded on Apple Store or Google Play. The app is connected to the user’s Apple or Android watch
Seizure Action Plan
Seizure Action Plan
A seizure is a medical emergency. A Seizure Action Plan (SAP) contains tailored guidelines on how to respond during a seizure, based on the patient’s medical history. It includes health and medical information specific to the patient and helps others recognize seizures and the appropriate steps to take to keep him or her safe from injury or damage caused by prolonged seizures.
https://seizureactionplans.org/
Seizure action plan templates make it easier to create a plan that works for you. These templates are designed to be completed with your healthcare provider and shared with your care team.
Once completed, your plan should be:
Reviewed regularly
Updated when medications or seizure patterns change
Shared with anyone responsible for care or supervision
The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures.
Epilepsy Alliance America is a national organization representing like-minded local, regional, statewide, and even other national agencies dedicated to serving the needs of people who live with seizures and epilepsy every day.
The Epilepsy Foundation, in collaboration with our community and network partners, connects the people, data and resources needed to address challenging health problems associated with seizures and the epilepsies—and promotes education, policy, research and systemic change that will foster measurable and sustainable improvement for all people living with epilepsy.
Epilepsy Support Groups
Epilepsy Support Groups
At Young Adults with Epilepsy (YAWE), our mission is to foster resilience and independence in young adults with epilepsy. Through education, empowerment, and sustained support, we aim to transform lives by facilitating access to resources, promoting awareness, and creating a nurturing community that embraces diversity and inclusivity.
Join our one-hour virtual weekly hang-outs to laugh, cry, listen, or just simply connect with people who ‘get it.’ Our virtual support groups provide a safe space to share experiences with others living with epilepsy.
Epilepsy is a hidden disorder. Despite how common it is fear and stigma exist. It's easy to feel isolated and alone. Members of support groups share experience, engage in advocacy, provide information and help each other. A support group can provide a safe space to talk about the impact of epilepsy and seizures and how to overcome those challenges.
https://epilepsyallianceamerica.org/programs-services/support-groups/
Empowering Epilepsy connects people with epilepsy to experts and peers for education, care, and friendship. We anchor a caring community that empowers our members and their loved ones to better understand and manage their treatment plan throughout their epilepsy journey.
Join Empowering Epilepsy for free monthly Age Based Virtual Support Groups, specifically for people in your age group who are living with seizures. Meet others who understand epilepsy, learn strategies to manage your seizures, and make new friends.
The Epilepsy Foundation of America® is the national voluntary health agency dedicated solely to the welfare of the more than 2 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure.
Find the Epilepsy Foundation office closest to you for support, resources, and events. Search using your zip code for best results or do a search by state.
Non-Profit Epilepsy Organizations
Non-Profit Epilepsy Organizations
Founded by Chicagoans Mike and Mariann Stanton in January 2010 after the death of their four-year-old son Danny, the Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing SUDEP education and disclosure between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths.
PAME began in 2012 as a multi-stakeholder conference focused on raising awareness and understanding of all forms of preventable epilepsy-related mortality, including; suicide, accidents, status epilepticus, and Sudden Unexpected Death in Epilepsy (SUDEP). These meetings are unique in that they convene health care providers, basic and clinical researchers, public health officials, advocates, death investigators, people living with epilepsy, caregivers, and bereaved families around a shared agenda. In addition to hosting a yearly meeting in advance of the American Epilepsy Society's Annual Meeting, PAME provides ongoing educational opportunities throughout the year, convenes various committees and spearheads efforts to address gaps in mortality research, communication and prevention.
Kayven’s Helping Hands Foundation was created to honor the life and legacy of Kayven Hopper, a bright, adventurous, and imaginative young boy who touched the lives of everyone around him. Kayven loved to explore, create, and be part of the action. Whether he was scouting, practicing martial arts, or playing music, Kayven approached life with an energy that was both inspiring and infectious. Our mission is rooted in Kayven’s adventurous spirit, aiming to empower children and families through three core initiatives:
Literacy: Promoting a love for reading with programs like the Little Free Library, ensuring every child has access to the magic of books.
Enrichment Fund: Providing resources for camps, clubs, and activities that inspire curiosity, creativity, and personal growth.
Empowerment: Connecting individuals with epilepsy and their caregivers to critical resources, education, and support, especially in central and rural Kansas.
The Cameron Boyce Foundation (est. 2019) honors Cameron’s legacy by empowering young adults living with epilepsy through education, support, and community, while working to end SUDEP.
Cameron Boyce was an actor and humanitarian whose voice had the power to elicit change through his wide reach and massive social following in more than 100 countries around the world. Cameron was extraordinary beyond measure, and The Cameron Boyce Foundation (TCBF) celebrates his life and legacy by continuing to work on the causes that were dear to Cameron’s heart and by raising awareness and working towards a cure for epilepsy.
CURE Epilepsy's mission is to fund breakthrough research that will transform the lives of people with epilepsy as we lead the search for a cure.
From our founding in 1998, CURE Epilepsy has always been focused on research that will ultimately lead to a cure. Our mission statement now better acknowledges the breakthroughs that we’re making on our way to a cure.
Additional Epilepsy Resources
Additional Epilepsy Resources
Books:
I Spark Like Lightning: A book about epilepsy (Disability Books for Kids) by Jenna Elyse Johnson
The Sacred Disease: My Life with Epilepsy Kindle Edition by Kristin Seaborg
The Sparkle in my brain: A story about epilepsy Paperback – September 19, 2024 by Ms. Desire Love
Let's Learn with Teddy about Epilepsy Paperback – August 1, 2008 by Dr. Yvonne Zelenka
Podcasts
Podcasts
What the EF (WTEF) is a podcast that discusses, points out, and chuckles at the ridiculous, poignant, heartbreaking, and sometimes funny sh*t that happens with epilepsy. By adding laughter to the conversation, people can connect, lower their guards, and open themselves to vulnerable discussions. The podcast’s goal is to explore the annoying, beautiful, and traumatic aspects of life with epilepsy, couched in laughter.
Hosts Lexi Talkington and Landis Wiedner bring in experts, celebs, and regular folks to shed light on the crazy epilepsy sh*t that no one seems to talk about. Drawing upon their own experiences, Landis and Lexi facilitate conversations on taboo topics in the seizure sphere.
https://www.whattheefpodcast.com/
The Young Epilepsy Podcast - real stories, expert advice, and honest conversations that matter. Whether you live with epilepsy or support someone who does, this is your space to feel informed, empowered, and connected.
https://www.youngepilepsy.org.uk/what-we-do/youth-voice/lets-talk-about-epilepsy-podcast
Seizing Life® is a CURE Epilepsy podcast and videocast aiming to inspire empathy, offer helpful stories, and give hope as we search for a cure for epilepsy. Listen as guests share stories and insights on living with epilepsy in conversation with our host, Kelly Cervantes.
https://www.cureepilepsy.org/seizing-life/
ILAE's mission is to ensure that health professionals, patients and their care providers, governments, and the public world-wide have the educational and research resources that are essential in understanding, diagnosing, and treating persons with epilepsy.
https://www.ilae.org/journals/epigraph/sharp-waves-podcast/sharp-waves-podcast
Other Websites
Other Websites
Contact Us:
Contact Us:
Email: nathansmemorial@gmail.com
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