Partner Seizure Support Resources

The Dup15q Alliance has carefully selected resources that may be helpful for those who care for individuals with Dup15q syndrome who have seizures. Explore the helpful list below.

Find an Epilepsy Center Near You

Epilepsy centers provide a comprehensive team approach to the diagnosis and treatment of epilepsy. A patient-oriented team will typically include epileptologists (neurologists with expertise in treating seizures), neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, social workers, and others with training and experience in epilepsy care. Specialized epilepsy centers provide routine care to individuals with seizures or epilepsy, and specialize in providing comprehensive diagnostic and treatment services to individuals with uncontrolled seizures (i.e., intractable or refractory epilepsy). Find an Epilepsy Center Near You: HERE

Rescue Medications Video Demonstrations

Rescue medications can be an essential part of a Seizure Action Plan and are given to the person having the seizure.

Click on this link to explore seizure rescue medication demonstration videos

Preventing Epilepsy Deaths: Clinician and Family Toolkit

In 2022, the Child Neurology Foundation convened a group of people with lived experience and experts in the epilepsy community from the US, Canada, and the UK to collaboratively create this toolkit, which over 50 people and 18 epilepsy organizations have endorsed.  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. Learn More Here: Preventing Epilepsy Deaths: Clinician Toolkit

Child Neurologist New Visit Toolkit

You can use the forms in this toolkit prior to your first visit with a neurologist or when visiting a new neurologist. We recommend you print this form out and bring it to the visit with you as well as keep an electronic or paper copy for yourself. It will be a valuable resource to track your child’s journey and ensure the best quality of care. You can find the toolkit here.

Epilepsy Toolkits

Resources created by The Epilepsy Learning Healthcare System (ELHS) on medication cost, taking medication, and side effects of medications.

Imagine building a learning health system in which all people – family and community members, clinicians, researchers and health system leaders – work together. They design, implement, and share the results of collaborative research and quality improvement efforts. And this work leads to better health outcomes and increased quality, experience, and value in care. A learning health system approach can dramatically accelerate the ability to generate new knowledge and put it into practice.

Epilepsy Foundation Online Training

The Epilepsy Learning Portal is your one-stop shop to access the Epilepsy Foundation’s online and on-demand training classes about epilepsy and seizures. Here are some of their most popular classes. Feel free to browse their full class catalog.

Get the Facts – Epilepsy in the African American Community

Pediatric Epilepsy Surgery Alliance

The Brain Recovery Project dba Pediatric Epilepsy Surgery Alliance is a 501(c)3 nonprofit corporation that enhances the lives of children who need neurosurgery to treat medication-resistant epilepsy.

We are a caregiver-led, science-driven organization with lived experiences of the pediatric epilepsy surgery journey. We empower our families with research, support services, and impactful programs before and after surgery. 

Child Neurology Foundation Epilepsy Education Hub

In-Home EEG

Information on in-home EEG services. RSC Redefining Seizure Care and Neurotech EEG

Seizure Detection and Prediction Devices:

While no device has been proven to prevent epilepsy-related mortality (including SUDEP), the Danny Did Foundation has developed a list of seizure detection and seizure prediction devices – as well as other technologies – that are designed to enable intervention by a caregiver. Intervention is believed to reduce the risks that accompany epilepsy. We present these products for further review and investigation by anyone connected to seizure disorders.

SAMI Monitor

SAMi is the only contact-free, no-wearable smart monitor capable of detecting and alerting to a wide range of seizure-like movement at night. SAMi is designed to alert caregivers and automatically record a wide range of abnormal or seizure-like movement at night

Created by parents of a child with Epilepsy, this third generation camera system is the result of years of rigorous field testing, countless engineering hours, and hundreds of iterations over the last 10 years.  SAMi utilizes temporal and spatial filtering to increase sensitivity while reducing false alarms.

Use code “Dup15q” at checkout to get 10% off any SAMi purchase. 

Danny Did Seizure Detection Device Grant Program

If you are seeking funds to help with the cost of a device, review and research the product options below, and then complete our application. Note, the DDF does not provide funding support for every system listed below. See each product for details to learn more.

Danny Did Resources

The Danny Did Foundation is dedicated to its mission to prevent deaths caused by seizures.

Chelsea Hutchison Foundation

This Foundation provide grants for seizure-response dogs and epilepsy monitors for those in need, educate the public about SUDEP (Sudden Unexpected Death in Epilepsy), and provide support to those who have been affected by SUDEP.

Josh Provides Epilepsy Assistance Foundation

Program provides financial assistance to individuals affected by epilepsy or other seizure disorders. Financial assistance for medical services, seizure alert and detection devices, seizure response dogs, and transportation and travel.

VNS Therapy Access Program

This program was established to provide access to VNS Therapy System for appropriate patients lacking both insurance coverage and the ability to pay for the VNS Therapy System. To establish eligibility, patients should contact their physicians.

SEIZURE TRACKING:

Seizure Tracker:

Seizure Tracker is dedicated to providing patients, doctors and researchers with free comprehensive tools to help understand relationships between seizure activity and anti-epileptic therapies. The reports generated by Seizure Tracker become a valuable communication aid when meeting with doctors because all the necessary information is in one brief report. With a simple keystroke, you can customize a report to outline talking points you’d like to discuss with your doctor.

SEIZURE RESPONSE DOGS:

Canine Assistants

Canine Assistants teaches and provide seizure response dogs for recipients who have seizures. Following general education, seizure response dogs are taught to remain next to the person during the course of a seizure, summon help in a controlled environment, or retrieve a phone prior to the seizure when indicated by the recipient. Certain dogs may even develop the ability to predict and react in advance to an oncoming seizure once they are placed with their recipient.

K94Life

Service Dogs provide greater independence, joy, fulfillment, confidence, security, and love. Our service dogs are trained to help individuals who have a wide range of disabilities. CPL trains service dogs to assist individuals who have mobility impairments, balance disorders, difficulty using their hands/arms, health-related fatigue issues, people with seizure/cardiac syncope and diabetes/ blood pressure disorders.

Paws with a Cause

PAWS Seizure Response Dogs are custom-trained to assist people who have epilepsy with tasks such as activating a life-alert system, finding someone to help, retrieving a phone or stimulating a person during a seizure. As a person recovers from a seizure, a PAWS Dog can retrieve medications or food, act as a brace to help them up and provide comfort. PAWS Seizure Response Dogs are NOT trained to protect or predict seizure activity. However, after several years with a client, some may develop the ability to alert their owner of an oncoming seizure. This behavior is not guaranteed to develop, nor to be consistent if it does develop.