Epilepsy Care

A young member of our family died in 2008 at age four from a poorly understood phenomenon called Sudden Unexpected Death in Epilepsy (SUDEP).  Epilepsy is one of the most common and neglected brain diseases globally, affecting an estimated 50 million people.  The BAND Foundation supports epilepsy-related work with an emphasis on SUDEP prevention and education, cutting-edge research and most recently an initiative to narrow the treatment gap in low income countries.


Grants in Focus

Project: Making Epilepsy a National Priority in African Countries
Grantee: International Bureau for Epilepsy (IBE)

More than 10 million people in Africa have epilepsy, yet at least 80% do not receive effective treatment.  While epilepsy can be a devastating and chronic condition, with basic and affordable medication, more than 70% of people living epilepsy could have seizure control.  However, in much of Africa, epilepsy is misunderstood, stigmatized, underfunded and ignored by the health care system. This project, through technical assistance and small grants, aims to strengthen the advocacy capacity of African IBE chapters to advance effort to improve epilepsy care at all levels of society. 

Project: Promising Strategies in Africa
Grantee: International Bureau for Epilepsy (IBE)
Summary: The International Bureau for Epilepsy (IBE) is deeply committed to finding new and innovative solutions to the problems affecting people with epilepsy and their families worldwide.  IBE’s Promising Strategies Program has been providing financial support to IBE chapters for small enterprises and cutting-edge initiatives since 2005.  The BAND Foundation is partnering with IBE to launch a Promising Strategies initiative in Africa.  This program will award competitive funding to select African epilepsy patient organizations to advance efforts to reduce stigma, expand community awareness and improve treatment.  Lessons learned will be shared with other IBE chapters with the goal of replication across the continent.

Project: Addressing Onchocerciasis Associated Epilepsy in South Sudan
Grantee: Amref Health Africa
Summary: Nodding syndrome (NS) is a severe form of epilepsy affecting young children in certain African countries.  Growing evidence suggests that this condition is caused by the same black fly responsible for River Blindness or Onchocerciasis, a neglected tropical disease.  Hence, NS is now referred to as Onchocerciasis Associated Epilepsy (OAE).  In places where OAE is endemic, it is thought to be one of the leading causes of preventable epilepsy. This project focuses on areas of South Sudan where the incidence of OAE is highest, i.e., affecting 50% of families and 1 in 6 children.  Epilepsy medication combined with a rigorous river blindness control program can treat those infected and prevent future cases.  This project will: 1) train health care workers to identify and treat people with epilepsy; 2) inform and guide the development of policies and guidelines on epilepsy and NS by South Sudan’s Ministry of Health; 3) demonstrate the effectiveness and cost efficiency of prevention and treatment measures; and 4) shape the narrative around this neglected syndrome globally.

Project: Pediatric Epilepsy Mortality Initiative (PEMI)
Grantee: Weill Cornell Medicine
Summary: The Pediatric Epilepsy Learning Healthcare System (PELHS) is a consortium of 20+ academic pediatric epilepsy centers in the United States. The PELHS mission is to reduce seizures and their consequences for children with epilepsy through cycles of health data collection and analysis, dissemination of new evidence, and practice change.  The PELHS Pediatric Epilepsy Mortality Initiative will identify, review, and classify deaths among children with epilepsy to identify potential interventions that would prevent those deaths. The Initiative will also measure and track adoption of four clinical interventions that may reduce pediatric epilepsy deaths: SUDEP counseling (including counseling about nocturnal supervision), referral of children with refractory epilepsy to comprehensive care, prescription of rescue medication, and anxiety / depression screening (i.e., to prevent suicide).

Project: Identifying data-driven risk factors of SUDEP through patient-reported outcomes
Grantee: Seizure Tracker & Children’s National Medical Center
Summary: This project will identify families impacted by SUDEP through Seizure Tracker, a patient reported seizure diary, and leverage their historical data to highlight changes in seizure patterns as precursors to SUDEP.  The project goals are to: 1) Leverage retrospective data to identify SUDEP risk and inform prospective studies, 2) Develop outreach content to increase education and awareness about SUDEP.

Project: Having the conversation: A SUDEP communication guide
Grantee: DUKE University School of Medicine
Summary: It is well documented that people with epilepsy and their families desire early, transparent communication about SUDEP. Yet clinicians do not regularly counsel people with epilepsy about this risk, often because it is a “difficult conversation” to initiate.  This project will research barriers to early and ongoing communication about SUDEP risk and will develop an evidence-based clinician-facing conversation guide to facilitate conversations about SUDEP risk. It will also develop a patient/parent-facing question prompt list to guide SUDEP conversations with their providers.


Scientific Meetings

BAND funds scientific meetings that expand our understanding of epilepsy’s basic mechanisms and of how to improve clinical care and treatment.  Select examples include:

Grantee: American Epilepsy Society
Meeting: Sleep and Epilepsy Meeting, May 2019
This meeting will bring together leaders from the sleep and epilepsy fields to review the current science and identify future research opportunities to advance understanding of the relationship between sleep and seizures, including Sudden Unexpected Death in Epilepsy. 

Grantee: American Epilepsy Society
Meeting: Partners Against Mortality in Epilepsy (PAME) is a biennial conference that brings together professionals (clinicians, basic science researchers, and others) with public health officials and people who have epilepsy and their families/caregivers. The purpose is to increase understanding of mortality in epilepsy–particularly Sudden Unexpected Death in Epilepsy (SUDEP).

Grantee: The Alzheimer’s Association
Meeting: Epilepsy and Alzheimer’s Disease – Overlapping Mechanisms and Therapeutic Opportunities, September 2017

Grantee: Children’s National Medical Center
Using Electronic Health Records to Advance Epilepsy Care, January 2017
This meeting brought together experts from a number of pediatric epilepsy practices to consider how to use the Electronic Health Record Systems to improve the overall efficiency and quality of care of patients with epilepsy.  A summary of the meeting will be published in the journal Neurology in February 2019.

Nature Conservation. Epilepsy Care.