There are many places that can help you and your family learn more about epilepsy, managing seizures and finding ways to cope. Below is a list of epilepsy resources that can help you learn how to more easily understand ways to live well with epilepsy.
A quarter of all patients with autism have epilepsy.
In individuals with autism, epilepsy is often difficult to control and severely affects their quality of life. FACES has supported the creation of a clinical and genetic data repository of people with autism and epilepsy, with the aim of identifying biomarkers for drug responsiveness. Epilepsy in autism is associated with lower cognitive ability and more severe behavioral symptoms.
We are also partnering with the Simons Foundation to identify quantitative MRI abnormalities in the brains of people with autism that are potential biomarkers for seizure risk and responsiveness to medications.
Another study in collaboration with Richard Tsien, PhD, Director of the NYU Druckenmiller is investigating human brain tissue and animal models of autism to understand the molecular mechanisms that contribute to both epilepsy and autism.
What you should know about mental health in youth with epilepsy.
Danny Did Foundation The Danny Did Foundation focuses on Epilepsy Awareness and SUDEP – Sudden Unexplained Death Due to Epilepsy. Many people with epilepsy die each year from SUDEP. Knowledge is power, so please check them out to learn more.
SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1 Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary.2
Dravet Syndrome Foundation Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.
Approximately 40% of individuals with epilepsy struggle with a mental health issue. Our agency offers mental health and supportive services for individuals with epilepsy and other developmental disabilities. Our mission is to empower individuals to bridge the gap in their service needs. We approach care in an integrated model – medical, psychiatric, behavioral, supportive, and social issues are all addressed during treatment at the same time which improves outcomes for persons served. All of our services can be provided in the home, community, or our office.
Epilepsy Centers of Excellence– The VA founded the Epilepsy Centers of Excellence (ECoE), establishing 16 sites that are linked to form 4 regional centers. The ECoE seek to provide the best possible epilepsy care to Veterans throughout the United States with state-of-the-art diagnostic and therapeutic services.
The VA Epilepsy Centers of Excellence (ECoE) video series “Veterans and Epilepsy: Basic Training” addresses the stigma of epilepsy and educates Veterans, their caregivers, and the general public about living with epilepsy. Each video in the series features a Veteran sharing his or her personal experiences and unique challenges balancing the medical, personal and social aspects associated with having recurring seizures. The goal of the video series is to promote public awareness of the impact of epilepsy in the lives of Veterans and to convey that these patients are able to live full, productive, successful lives.
Epilepsy Free Provides patient and family support, education, and .esearch towards the ultimate goal of enabling others to live their lives Epilepsy Free,
Guide for Law Enforcement Many people often mistake seizures for drug abuse or mental health issues. Law enforcement personnel need to be able to recognize seizures before determining that a person is acting irrationally or creating a disturbance. This is an article from the Epilepsy Foundation written specifically for law enforcement personnel. Click here to learn more.
After epilepsy is diagnosed, and seizure medication (antiepileptic drug, AED) is started, doctors have no way to predict who will be among the 1/3 of patients who will continue to have seizures, due to AED treatment resistance. Also, we have a very poor understanding of the causes of treatment resistance.
The Human Epilepsy Project (HEP) is a large, 10-year prospective study whose goal is to identify biomarkers that predict epilepsy outcome, progression and treatment response in patients with recently diagnosed focal epilepsy. HEP is a partnership between 33 international academic centers, foundations, and industries, led by the Comprehensive Epilepsy Center at NYU Langone. HEP will collect high resolution MRI, EEG, and blood samples on 500 patients who are tracking seizures in a digital diary. Each patient will be followed for 3-6 years. HEP also collects information on memory, mood and drug side effects over time, which will allow us to determine whether there is any progressive disturbance in these areas that are so important to quality of life.
This project will create an open data repository of clinical information and biologic samples that will allow researchers to determine how all these elements are related. Already we are gaining important insights into likelihood of mood problems, association between specific abnormalities in brain imaging and treatment resistance, and likelihood of response to different medications.
J Kiffin Penry Patient Travel Assistance Provides reimbursement of travel expenses for eligible patients and their families who have had to travel more than 50 miles from their home to receive FDA approved medical care and/or treatment for their epilepsy/seizure disorder, but lack adequate financial resources to meet the cost of this travel without bearing financial hardship.
Josh Provides Josh Provides supplies valuable services to individuals and families living with epilepsy in order to maintain a better life.
Medications and Epilepsy– What happens if you miss a dose, side effects and more – provided by the Epilepsy Center of the Cleveland Clinic Neurological Institute.
Neurology Now –a magazine with tons of information on living with epilepsy is published 6 times per year and mailed free to interested individuals. Complete the form on this page to subscribe.
Rare Epilepsy Network – REN –The Rare Epilepsy Network (REN) PPRN is an initiative created by and for patients with catastrophic rare epilepsies. The REN’s goal is to build a patient-centered and -driven database designed to provide the patients and their families an opportunity to participate in research that will improve the lives and quality of care for people with rare epilepsies.
The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.
Social Security Disability Insurance pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.
SUDEP – Sudden Unexplained Death Due to Epilepsy SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1 Studies suggest that each year there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy, although estimates vary.
WAMM– The WoMen’s Alliance for Medical Marijuana – The Wo/Men’s Alliance for Medical Marijuana (WAMM) is a collective of patients and caregivers providing hope, building community and offering medical marijuana on a donation basis. We offer a safe, organic supply of medical marijuana to patients with a doctor’s recommendation for the treatment of terminal and chronic illness. Located in the beautiful Santa Cruz, California.