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

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DEVELOP EPILEPSY

Devices & Technology

While no device has been proven to prevent epilepsy-related mortality (including SUDEP), the Danny Did Foundation is devoted to seeking out 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.


DANNY DID GRANT PROGRAM: For certain resources - indicated within the list below - the Danny Did Foundation provides financial assistance for qualified individuals who require financial support. If you are seeking funds to help with the cost of a device, please review the options below and contact us at info@dannydid.org. Please indicate the device that fits your needs in your email. We will reply to your email with our grant application. Please note, we can only assist with one resource per family. 


Disclosure: The Danny Did Foundation cautions that not all devices listed on this page are approved by the United States Food and Drug Administration. Unless noted, these resources are consumer products and not medical devices. Further, the Danny Did Foundation encourages and strongly recommends your communication with the manufacturers of these products, as well as consultation with doctors, to determine the possible efficacy of such devices for your situation.

Please note, the Danny Did Foundation does not warrant these products and is not a manufacturer, distributor, seller, representative, or broker of the products shown on this website. The Danny Did Foundation offers only cursory and introductory information about the potential of these devices and does not accept responsibility for the consequences of the actual use of any device listed on this website. If you would like to read an article review of seizure monitoring devices that was published in Epilepsy & Behaviorclick here.

FIVE QUESTIONS TO ASK: Be sure to review these key factors when considering which system could be a fit for your needs. 


NON-INVASIVE ALERTING SYSTEMS


emfit

Emfit Movement Monitor & Emfit QS

Subsequent to outreach from the Danny Did Foundation and the Epilepsy Foundation of Greater Chicago, the Emfit monitor is in various stages of clinical testing trials at multiple epilepsy centers in the United States. This non-invasive detection device monitors for movement activity during sleep and is widely used and marketed in Europe as an Epilepsy Seizure Alarm. Emfit also offers the Emfit QS product to track multiple variables during sleep. For qualified candidates, Danny Did may be able to provide financial assistance. Learn more about Emfit here.


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SmartWatch Inspyre

The SmartWatch Inspyre™ by Smart Monitor is designed is designed to be used on an Samsung or Apple Watch to detect repetitive shaking motion. When the Inspyre detects abnormal motion, it sends a signal to the app running on the user’s device (iPhone or Android phone) to send text and phone call alerts to whomever the SmartWatch Inspyre™ user designates, such as multiple family members and care providers. When that occurs, family members receive these alerts which include the date, time, location, and duration of the event. SmartWatch Inspyre™ users can also summon help with the push of a button. Alerts can be sent to any phone, anywhere, and reports of each event can be accessed for later review with physicians. In the first quarter of 2018, a newly added feature to this system will be the capability to record heart rate data. To use the system, you must have or purchase specific hardware (an Apple or Android watch). Other costs include payment of a monthly subscription fee. For qualified candidates, Danny Did may be able to provide financial assistance. Visit the SmartWatch Inspyre website here to learn more.


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Embrace Watch by Empatica

The Embrace product made by Empatica is a wristwatch worn device that is designed to detect and alert for tonic-clonic (convulsive) seizures after 20 seconds, and to monitor physical activity and rest. The Embrace transmits data to a paired smartphone via a Bluetooth connection, and has the ability to alert others via a text message and phone call when certain seizure types occur. The Embrace system requires the person wearing the watch to have a compatible smartphone, which they must keep within approximately 25 feet. 

The costs for this system include a one-time purchase of the watch, as well as payment of a monthly subscription fee. This system received FDA approval in 2018 for its ability to alert to convulsive seizures. For qualified candidates, Danny Did may be able to provide financial assistance. If you are applying for funding for a child user, please note that the child must have their own smartphone with them at all times, and the caregiver must have their own phone to receive the alert. To learn more about this product, visit the Embrace website here.


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SAMI – The Sleep Activity Monitor

SAMi is a sleep activity monitor for caregivers and individuals who need to watch for abnormal movements at night. During sleep, audio-video information from a remote infrared video camera is sent to an app running on an iOS device such as an iPhone or iPod Touch. The SAMi app records and analyzes the video for unusual activity. When an unusual event is detected, an alarm is sounded, followed by live sound and video from the SAMi network camera. A parent/caregiver can then take any necessary action. Click here to visit the SAMi-Alert website. To watch a video demo of the SAMi system, click here. For qualified candidates, Danny Did may be able to provide financial assistance. 


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 PulseGuard 

 PulseGuard is a monitoring system designed to detect seizures that are associated with a rise or fall in a heart rate. The PulseGuard system consists of two components: a wrist or ankle worn sensor housed within a strap, which communicates via Bluetooth with the PulseGuard tablet (a specially modified Apple iPad).

If heart rate drops below the lowest perimeter that has been set, this product is meant to send an alarm through the iPad, which must be located near the user. If you sleep in a separate room from the user and want to be notified of an alert, you would need an additional accessory to reroute the alert into the room you sleep in.This system was initially developed by a father for use by his son, who has Dravet syndrome. The PulseGuard is sold by Adris Technologies, which is based in England. It is not marketed as a medical device. Users are meant to be age six months or older. Orders are place through the product website, which is here. For qualified candidates Danny Did, may be able to provide financial assistance.


masimo8

Portable Pulse Oximeter

Portable pulse oximeters are non-invasive medical devices that typically attach to a fingertip or a toe to measure heart rate and blood oxygenation percentage —both vital statistics that are affected while a person is seizing. These devices are not explicitly designed or manufactured to detect seizures, but pulse oximeters do have applicable monitoring and alarm-sounding functions that can be useful to some who experience seizures. Please contact the manufacturer and your doctor to determine if a portable pulse oximeter fits into your sleep-time seizure-detection plan and whether access for this device (or others like it) can be enabled to individual patients for home use. Learn more information on the Masimo Rad-8 pulse oximeter HERE. The customer support phone number for Masimo is (800) 326-4890. Be sure to ask for the "home care sales representative" that covers your zip code. That rep will work to connect you with the nearest Durable Medical Equipment (DME) provider that sells this product in your area. Note, Masimo does not sell this resource direct to consumers. 


IMPLANTED TECHNOLOGIES 


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VNS Therapy / LivaNova

Vagus nerve stimulation (VNS) is a technique used to treat epilepsy that involves implanting a pacemaker-like device into the chest that generates pulses of electricity to stimulate the vagus nerve. The VNS Therapy System is an FDA-approved medical device specifically developed for the treatment of drug-resistant (medically refractory) epilepsy. The vagus nerve is one of the 12 cranial nerves, which conduct impulses between the brain and other parts of the brain and various body structures, mostly in the head and neck. VNS is not a cure, and the total elimination of seizures is rare. However, some people who undergo VNS experience a significant reduction in the frequency of seizures, as well as a decrease in seizure severity. In 2015, a version of the VNS called the AspireSR generator was cleared for FDA-approval. The AspireSR is different from conventional VNS treatment in that it features responsive stimulation to heart-rate increases. A smaller and more advanced version of VNS called SenTiva became available in 2017. The VNS system now has FDA-approval for use in patients as young as 4 years old. To learn when to consider VNS and to gain additional background, talk with your doctor and visit the LivaNova website HERE.


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NeuroPace RNS (Responsive Neural Stimulation) System

The RNS System involves the surgical implanting of a matchbook-size device that is attached to the surface of the brain. It focuses on a closed-loop approach to interrupting and preventing seizure activity. The RNS is programmed to continuously monitor brain wave activity, to sense the onset of a seizure within a neural network, and to deliver seizure-stopping electrical stimulation once seizure activity is detected. In late 2013, NeuroPace received FDA-approval to market the RNS System as a treatment for medically refractory (uncontrolled) epilepsy in adults. It has been evaluated in three clinical trials. Learn more about the NeuroPace RNS system here.


081814visualaseVisualase Laser Surgery / Medtronic

Visualase is minimally invasive MRI-guided laser surgery technique for people whose seizures are not controlled by medication that is now being used at a select number of medical centers around the country. Rather than standard open brain surgery, a laser fiber is inserted into the skull to precisely target areas of the brain causing seizures. Light energy from the laser heats the brain tissue, effectively destroying it. Upon removal of the laser applicator, only one stitch is needed to close the wound. The technology usually requires only an overnight hospital stay. To learn more about this new technology and whether it could be an option for your loved one, talk to your doctor. For more background and to see locations where this surgery is performed, visit http://www.visualaseinc.com/location-sites.


NON-TECH SAFETY RESOURCES 


PromoPicThe Safety Place Mat

The Safety Place Mat is made of soft, lightweight, durable and easy to clean foam construction. It is designed to protect individuals from head, face and upper body injuries while sitting at a table. This mat offers padding not only on the tabletop, but also at the table’s edge and front ledge. The Safety Place Mat can be used at dining tables, desks, kitchen bar areas, coffee tables, bedside tray tables and wheelchairs trays and other similar places. It is suitable for round edge tables, and its recessed surface design also minimizes cleanup when a spill occurs. This product was developed by parents after their young son received numerous injuries to his head and face while sitting at a table when seizures occurred. It is transportable and can be used at home, at school or at restaurants. To learn more or to buy this product online ($43 each), visit the company website here.


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Sleep-Safe ® Anti-Suffocation Pillow

Developed by a pharmacist whose son is prone to seizures while sleeping, the Sleep-Safe ® Anti-Suffocation Pillow is a registered Class I Medical device as categorized by the United Kingdom’s Medical and Healthcare Products Regulation Agency, which is the UK government agency responsible for ensuring that medicines and medical devices work and are acceptably safe. Friends of the Danny Did Foundation can receive a 15% discount on orders of this product. Learn more about the Sleep-Safe ® Anti-Suffocation Pillow and place orders here. For qualified candidates, Danny Did may be able to provide financial assistance. 


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Drop Support Harness

Drop Support is a fall support harness for families and caregivers of individuals with epilepsy. This product is designed to manage and control falls to reduce the risk of injuries. The harness allows the user to walk unrestricted, but to still have fall support when assisted by the support handle. The support handle allows for a higher grab to reduce back strain. Drop Support is available in a variety of children's and adult sizes, with selection based on the user's size and weight. The cost ranges from $99-$129. This device can be used both inside and outside the home. To visit the product website for more product details, plus user reviews, click here


paws

Seizure Dogs

Seizure response dogs are a special type of service dog specifically trained to help someone who has epilepsy or a seizure disorder. Tasks for seizure dogs may include: summoning help by finding another person or activating a medical alert; pulling potentially dangerous objects away from a person’s body; “blocking” to keep individuals from walking into obstacles that can result in bodily injury or death; attempting to arouse an unconscious handler during or after a seizure; and carrying emergency medication and information regarding the handler’s medical condition. Further, some dogs may develop the ability to sense an impending seizure. There are several companies that train seizure response dogs for adoption. Options to research include Domesti-PUPS and 4 Paws For Ability Seizure Dogs. For additional information or to inquire about funding support for seizure dogs, visit the Chelsea Hutchison Foundation. The DDF does not provide grant funding for seizure dogs. 


MOBILE APPS


SeizAlarm / Mobile App

SeizAlert.Image.2018SeizAlarm is an iPhone and Apple Watch app which allows contacts of the app user to be automatically alerted when seizure-like motion is detected. The app can also enable a manually-delivered alert if the user needs immediate help, or thinks they might need help soon. Movement detection occurs via the sensors on the iPhone or the Apple Watch. If using the app through the Apple Watch, you also have the feature of heart rate based detection, which is not available with the iPhone alone. The alert notification includes the GPS location of the user. The subscription cost to enable the alert feature is $6.99 per month, or $69.99 per year. To learn more or to download the app, visit the product website at http://seizalarm.com


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CAPTUREPROOF / Mobile App

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 HERE, or call (415) 770-2020 to have someone walk you through how to set up your account. 


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Seizure Tracker / Website and Mobile App

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. Learn more at SeizureTracker.com

 

 


EEG MONITORING


 Neurotech-Logo

Neurotech EEG

Neurotech EEG provides in-home EEG testing and monitoring services in Illinois, Wisconsin and Indiana. Neurotech reps interact with your doctor to set up the appointment, check on your insurance coverage, send a technician to conduct the in-home testing and monitoring, and send the results to your doctor. This is an alternative to EEG testing that is conducted in a hospital or clinic. To learn more, visit www.neurotecheeg.com

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