Feature article: Do you need financial assistance to obtain seizure detection and seizure prediction medical devices or service dogs (for seizures)? Click here to find out more.
How to obtain financial assistance for seizure detection and seizure prediction devices or service dogs (for seizures)?
For our December issue, we have chosen to highlight a few of the epilepsy foundations that are doing amazing work; especially those that offer grants for medical alerting devices or service dogs for people living with epilepsy.
Most of us are familiar with the Epilepsy Foundation of America and the Epilepsy Alliance of America, but did you know that there is a plethora of foundations that work tirelessly to improve the lives of those living with epilepsy and to support individuals with much needed monetary grants for medical devices and service dogs for individuals living with seizures? The three wonderful foundations that you will read about below were founded in remembrance of a loved one who was taken tragically and unexpectedly as a result of epilepsy. Their families have turned their pain and loss into something that lives on by giving much needed resources to many in the epilepsy community. A prominent goal in all three is to help others prevent Sudden Unexpected Death in Epilepsy (SUDEP) through education but also by providing financial support for means that can prevent this terrible occurrence in others' lives.
What is SUDEP? SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP is believed to be the cause of approximately 10% of seizure related deaths. Unfortunately, due to the unpredictable nature of SUDEP it remains understudied. Although all patients with Epilepsy are at some risk for SUDEP, research suggests some populations of patients are at increased risk.
Who is at risk? Primarily, it is thought that patients with a long history of poorly controlled seizures are at greater risk. Also, patients with generalized tonic-clonic seizures 'Grand Mal' appear to be at increased risk as opposed to other types of seizures such as absence 'Petit Mal' seizures or complex partial 'psychomotor' seizures. SUDEP also appears to typically affect younger individuals with epilepsy. Approximately 75% of all SUDEP deaths occur in individuals between 20 to 50 years of age. Poor compliance with medications as well as the use of alcohol or illicit drugs could increase your chance of having a SUDEP event. Nocturnal seizures also pose an increased risk.
What causes SUDEP? Several theories exist as to the cause of SUDEP. These typically point to the interruption of either cardiac or respiratory function during or following a seizure event. Possible causes include cardiac arrest or arrhythmias induced by signals from the seizing brain or poor oxygenation as the result of deficient respiratory drive.
Why has my doctor not mentioned SUDEP to me? Since SUDEP is very rare, some physicians may shy away from discussing the topic. However, the foundations below support increasing public knowledge about SUDEP in order to prepare and prevent as much as possible, in the hopes of avoiding a terrible tragedy.
What can be done to prevent SUDEP? Although this event can occur quite unexpectedly, there are some useful detection devices and service dogs who are trained to work with individuals with seizures. These can provide an added safeguard for patients with seizures and epilepsy. These products monitor the patient for seizure activity and are expected to alert family members when a seizure is occurring. They achieve this by recognizing rhythmic movements or detecting changes in heart rate which can occur during a seizure. In theory they could lower the chance of SUDEP by reducing the response time in which medical care is administered. As for service dogs, they become aware of a seizure quickly alerting the family.
The Danny Did Foundation was founded by the parents of Danny, Mike and Mariann Stanton, after Danny (who was just 4 years old) died in January 2010 due to Sudden Unexpected Death in Epilepsy (SUDEP). The mission of the Danny Did Foundation is to prevent deaths caused by seizures by increasing public awareness of SUDEP, enhancing communication between health professionals and families afflicted by seizures regarding SUDEP and supporting seizure detection and prediction devices that may assist in preventing seizure-related deaths.
The Danny Did Foundation offers grants for seizure detection and seizure prediction devices for to those in need. Presently, the Danny Did Foundation reports that it has provided grants to individuals in all 50 states and in 14 other countries.
To read much more about this wonderful foundation: https://www.dannydid.org/
For an application: https://www.dannydid.org/assets/1/6/DDF_Grant_App_2021_fill.pdf
And to lend your support to this fantastic foundation: https://www.dannydid.org/gift-shop/
The Chelsea Hutchison Foundation was created in honor of Chelsea Hutchinson who began having seizures at the age of 11 and who one night on April 19, 2009, at the age of 16, died quite unexpectedly after having a seizure in her sleep. The foundation was set up to serve individuals, families and communities affected by epilepsy by raising Awareness about SUDEP (Sudden Unexpected Death in Epilepsy), by providing support and equipment for prevention of SUDEP, and by creating a safe space and raising awareness within the greater community.
The Chelsea Hutchison Foundation provides grants for seizure response dogs for individuals living with epilepsy. This is done in the hopes that these trained animals can help to prevent SUDEP. The dogs can: alert others and summon help in the event of a seizure, secure a safe space for the individual suffering a seizure, rouse an unconscious individual, and carry vital information and medicine. The foundation lists approved service dog training organizations and lists several medical devices that can serve as seizure alerting tools.
To support this wonderful organization: Donate -- Chelsea Hutchison Foundation
The Josh Provides Foundation was established in honor of Joshua David Chapnick who lived with epilepsy since he was 16 years of age and lost his life just before turning 29. His family set up the Josh Provides Epilepsy Assistance Foundation, Inc. to support those living with seizure disorders by offering community education & awareness, local support groups and financially helping them with medical services, seizure detection devices and transportation costs. Click on this link to discover the many ways in which this foundation helps those living with epilepsy.
To find help: Get Help - Josh Provides
To support this superb foundation, go here: Make A Difference - Josh Provides where you can choose to either donate or become an ambassador.
We commend these families for their generosity in setting up such amazing resources for the rest of the epilepsy community. We also take time to remember the lives of these three beautiful people, Danny, Chelsea and Josh, taken too soon from their loved ones.
