Epilepsy Care
In 2008, we tragically lost a young member of our family to Sudden Unexpected Death in Epilepsy (SUDEP), a phenomenon that remains poorly understood and seldom discussed. Since this time, we have committed ourselves to shining a light on the public health burden of epilepsy and the risk of premature mortality. We actively support cutting-edge epilepsy research and place a strong emphasis on SUDEP prevention and education in the United States. In addition, we recognize the dire need for epilepsy care in low-resource settings, especially in Africa where the disease is more prevalent than in the US and the majority of people lack even the most basic of treatment.
The BAND Foundation does not accept unsolicited proposals. We seek to build relationships and work closely with our partner organizations to identify areas of high need where BAND support can be both strategic and catalytic in nature.
Grants in Focus: United States
Project: Expanding Collaborative Efforts to Understand and Prevent Epilepsy Mortality
Grantee: PAME
Summary: Partners Against Mortality in Epilepsy (PAME) is a network of diverse organizations and individuals who seek to share information, spark innovation, and drive progress in the fight against epilepsy-related mortality. PAME began in 2012 as bi-annual meeting focused on knowledge sharing and awareness among people affected and/or bereaved by epilepsy, health care providers, researchers and death investigators. As a result of coordinating 5 successful meetings PAME has grown a strong and diverse community that is eager to see this collaborative expand its influence. This project will allow PAME to deepen its impact through educational offerings and various other efforts that promote coordination to drive research and prevention.
Project: SUDEP & Epilepsy Mortality Education Toolkit
Grantee: Child Neurology Foundation
Summary: The Child Neurology Foundation (CNF) will spearhead a community process to develop and implement a SUDEP and Epilepsy Morality Intervention. The goal is to drive measurable behavior change in physicians and people with epilepsy by increasing their awareness of the risk for epilepsy mortality and SUDEP, and what can be done to decrease risk and save lives. CNF, in collaboration with leading epilepsy experts and organizations, will create a multi-pronged and multi-media tool kit focused on increasing provider discussion of SUDEP and mortality risk. It is hoped that such a collaborative process will lead to broad community endorsement of educational materials as well as evaluation of the intervention on health outcomes.
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: 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.
Project: SUDEP Data Standardization Project
Grantee: CURE Epilepsy
Summary: CURE Epilepsy seeks to lead the SUDEP research community in establishing common language and terminology for use in the collection and reporting of SUDEP data. The current lack of data standardization often makes studies difficult to interpret and compare, and decreases the overall collective impact of preclinical SUDEP studies. Standardizing data collection elements will allow data to be compared, evaluated, or aggregated so that meta-analysis can be conducted on larger data sets. Ultimately, the goal is to accelerate translation of preclinical SUDEP research to impact the lives of those at risk for SUDEP.
Project: UVA Health
Grantee: UVA Health
Summary: At UVA, researchers in the Department of Neurology aim to understand the neuropathological consequences of seizures or epileptic activity in patients with dementia compared to patients with dementia without seizures. They hypothesize that there is a measurable difference that can be detected early in the disease course between patients with dementia who develop epilepsy and those that do not. If they are correct and can identify this difference, UVA neurologists will be able to take the necessary steps to develop treatments and allow patients to live longer with a higher quality of life.
Project: Making Epilepsy a National Priority in African Countries
Grantee: International Bureau for Epilepsy (IBE)
Summary: 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: Pediatric Epilepsy Training (PET) in Zambia and Zimbabwe
Grantee: British Pediatric Neurology Association (BPNA)
Summary: In sub-Saharan Africa, there is approximately one neurologist for every 10 million people and even fewer neurologists specializing in the care of children. With so few specialists, it is vital that other healthcare professionals receive training in epilepsy care. The British Pediatric Neurology Association has developed a unique and internationally endorsed Pediatric Epilepsy Training (PET) program to train neurologists, pediatricians and other healthcare workers to recognize and treat epilepsy. The BAND Foundation, via ROW Foundation, supported the May 2023 launch of PET for health professionals from Zambia and Zimbabwe. A total of 27 new faculty members, half from Zambia and half from Zimbabwe, delivered two PET1 courses to 49 delegates from the respective countries. A fuller report can be accessed here.
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: Improving Access to Epilepsy Care in Ethiopia
Grantee: Children’s National Hospital
Summary: Ethiopia is one of the poorest countries in Africa with very limited access to epilepsy care. In order to improve care and to increase access to epilepsy treatment, this project will train non-specialist health providers and bring services closer to where people live. This project will use a task-shift model of training non-specialist health providers to diagnose, treat and follow people with epilepsy in the primary care setting. This partnership between CNMC and Yekatit Hospital Medical College in Addis Ababa seeks to develop a cost-effective, sustainable and scalable model to improve access to epilepsy care in low-income countries.
Project: Improved Community-level Care for Rwandan Children with Epilepsy
Grantee: ROW Foundation
Summary: The BAND & ROW Foundations are partnering to expand and improve epilepsy care at the village level in Rwanda, including reducing harmful stigma, identifying children in need, and connecting parents and caregivers with treatment options. The project will focus on training community health workers and mobilizing community leaders to increase understanding of epilepsy and to improve disease management and access to care. The Ministry of Health will be engaged to evaluate impact and plan possible expansion to other parts of the country.
Documentary: The Curse of Stigma
The Curse of Stigma – a powerful and intimate documentary film that tells the story of two African women living with epilepsy and the pain, isolation, and harm they have suffered because of discrimination and deeply embedded cultural beliefs. Their ultimate understanding of epilepsy as a treatable condition leads them to better health and brighter futures. By telling their truth, and the truth about epilepsy, they overcome shame – the ultimate curse of epilepsy stigma.
The preview of the The Curse of Stigma will be shown at the 2023 International Epilepsy Congress in Dublin, Ireland. The full documentary will be featured at select international film festivals in 2023-2024. For more information visit: thecurseofstigma.org
The BAND Foundation and the Whitten-Newman Foundation jointly produced this film to raise awareness of the challenges of living with epilepsy in Africa and the opportunity to address stigma and advance access to affordable treatment. Funds raised through this effort will go directly to IBE’s Africa Anti-Stigma Campaign.
For more information visit: thecurseofstigma.org
Resources
Research and toolkits supported by the BAND Foundation:
Duke University
A question prompt list for sudden unexpected death in epilepsy
Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective
IBE
Advocate’s Toolkit for Reducing Stigma in Africa
Advocate’s Toolkit for Making Epilepsy a Priority in Africa
CNF
Preventing Epilepsy Deaths Toolkit
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:
AES Sleep & Epilepsy Workshop:
In May 2019, the American Epilepsy Society (AES) hosted a Sleep and Epilepsy Workshop that included an expert multidisciplinary panel. This group discussed the intersection of these issues, identified gaps of knowledge, and began the process of identifying benchmarks for concentrated research in the basic, translational, and clinical sciences. These papers summarize the panel’s findings:
Workshop Summary
Section 1: Decreasing Seizures – Improving Sleep and Seizures, Themes for Future Research
Section 2: Comorbidities: Sleep Related Comorbidities of Epilepsy
Section 3: Mortality: Sleep, Night, and SUDEP
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
Meeting: 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.
