A.J. Trustey Epilepsy Research Endowed Fund

A message from Barbara Dworetzky, MD, chief, Division of Epilepsy at Brigham and Women’s Hospital and associate professor of neurology at Harvard Medical School

The A.J. Trustey Epilepsy Research Endowed Fund at Brigham and Women’s Hospital (BWH) was established by the Trustey family to support innovative epilepsy research with the goal of improving care for patients with epilepsy and their families. Thanks to the outpouring of support in memory of A.J., Joe, and Anna Trustey, several groundbreaking projects are already underway.

2016 Project Updates

Psychiatric Symptoms in Epilepsy
Daniel Weisholtz, MD
Associate Neurologist, BWH Division of Epilepsy

Psychiatric symptoms and mood disorders often go unrecognized in individuals with epilepsy—meaning they also go untreated—and represent a major burden for patients and their families. Working under the mentorship of Barbara Dworetzky, MD, and David Silbersweig, MD, chair of the BWH Department of Psychiatry, Dr. Weisholtz aims to improve our understanding of the co-morbidity between psychiatric symptoms and epilepsy.

Dr. Weisholtz’s unique training in both neurology and psychiatry means he is particularly well-positioned to enhance our knowledge of these issues across both disciplines. Through a study within the BWH Epilepsy Monitoring Unit, he is working to better understand the relationship between seizures and the psychiatric symptoms that often follow—including depression, anxiety, and psychosis. He is combining data from seizures recorded on EEG with detailed psychiatric assessments and chart review to determine which psychiatric conditions and medications might predispose patients to psychiatric symptoms after seizures. Through this work, Dr. Weisholtz aims to identify novel treatment approaches that could significantly improve quality of life for patients with epilepsy.

 

Transitioning from Pediatric to Adult Care: Improving the Current Care Model
Tadeu Fantaneanu, MD
Clinical Fellow, BWH Division of Epilepsy

Transitioning from the family-centered approach of pediatric care to the individual approach of adult medicine can be especially difficult for patients with chronic conditions. For patients with epilepsy, this transition often takes place through a transfer of care model where the patient is referred to an adult practitioner without formal interaction between pediatric and adult clinicians. By contrast, transition of care is a model where the adult practitioner meets with the pediatric practitioner as well as the patient and caregivers before the patient’s transfer to the adult hospital, facilitating the exchange of information and helping to establish the new relationship.

Under mentorship from Barbara Dworetzky, MD, Tracey Milligan, MD, and Phillip Pearl, MD, Dr. Fantaneanu and collaborators at Boston Children’s Hospital (BCH) recently established a transition clinic model between BCH and BWH. The team is now conducting a pilot study to assess patient, family, and caregiver satisfaction, as well as to compare transition success rates between patients transferred within and outside of this new model. Through this study, Dr. Fantaneanu and the team aim to maximize the success and quality of the new transition model, improving safety and enhancing quality of care for patients and their families.

 

Seizure Detection and Sleep-Dependent Memory Consolidation in Epilepsy
Rani Sarkis, MD, MSc
Associate Neurologist, BWH Division of Epilepsy

Sleep is known to be essential for the consolidation of memory, but how epilepsy affects this is unclear. In collaboration with Robert Stickgold, MD, PhD, from the Center for Sleep and Cognition at Beth Israel Deaconess Medical Center, and researchers from the Massachusetts Institute of Technology, Dr. Sarkis is conducting a pilot study to explore the relationship between seizures, memory, and cognition in patients with epilepsy.

Epilepsy is a common disease in the elderly, but is hard to diagnose because seizures in this age group can be very subtle and difficult to detect. In addition, patients often also have troubles with memory that adversely affect their quality of life. This intersection of cognitive decline and epilepsy has rarely been explored because of the tremendous medical complexities involved. For this pilot study, Dr. Sarkis is looking specifically at this patient population and using innovative wrist-worn sensors with the aim of detecting seizures, as well as shedding light on sleep quality and its relationship to memory consolidation. Findings could lead to new methods to detect seizures and new therapeutic strategies to improve memory deficits in patients with epilepsy.

 

Neurological and Emotional Symptoms Program Initiative
Gaston Baslet, MD
Associate Neuropsychiatrist, BWH Division of Psychiatry

Sometimes neurological symptoms arise from psychological distress rather than an identified neurological illness. When this occurs, the symptoms are referred to as functional neurological symptoms. The most prevalent subtype is known as psychogenic non-epileptic seizures (PNES). For patients with PNES, an accurate diagnosis is critical to their response and adherence to treatment. And, while there is some emerging evidence of effective treatments for PNES, there is still a need for practical implementation in the form of clinical programs.

Dr. Baslet is working to develop a comprehensive, multidisciplinary program to help coordinate care among patients with PNES and other functional neurological symptoms, such as psychogenic paralysis or psychogenic tremor. He has launched a pilot study to identify characteristics that predict treatment adherence and response, measure the effectiveness of psychotherapeutic interventions based on mindfulness principles, and identify factors that improve patient outcomes. It is believed that the formal implementation of this program will help to successfully engage patients in the treatments they need. Dr. Baslet also aims to characterize obstacles that limit engagement in treatment so that such challenges can be addressed.

 

To learn more about the A.J. Trustey Epilepsy Research Endowed Fund or how to make a gift—including instructions about giving through your donor-advised fund—please contact Ginny Fuller at vgfuller@bwh.harvard.edu or 617-424-4329.