A.J. Trustey Epilepsy Research Endowed Fund

A.J. Trustey Epilepsy Research Endowed Fund

Barbara Dworetzky, MD, and her team participate in the Purple Pumpkin Project, which aims to increase epilepsy awareness.

2017 FUND UPDATE

The A.J. Trustey Epilepsy Research Endowed Fund at Brigham and Women’s Hospital was established by the Trustey family to support innovative epilepsy research with the goal of transforming care for the millions who confront this devastating disease. Through the outpouring of support in memory of A.J., Joe, and Anna Trustey, our researchers continue to lead the way in groundbreaking research for patients and families worldwide.

We welcome your partnership. To make a new gift, contact Ginny Fuller at vgfuller@bwh.harvard.edu or 617-424-4329.

2017 TRUSTEY FUND RECIPIENT

Antiepileptic Drug Clearances During Pregnancy and Clinical Implications for Women with Epilepsy
Emma Voinescu, MD, PhD
Associate Neurologist, BWH Division of Epilepsy

Personalized treatment for pregnant women with epilepsy is essential. It requires thorough analysis of the risks and benefits of antiepileptic treatments for both mother and baby, as well as careful monitoring of how pregnancy-related physiological changes can change the way medication is absorbed. Therapeutic options for epilepsy are plentiful, and we now have a growing body of data to help us understand their impact on the baby in utero. We also know that pregnancy can change how quickly drugs are cleared from the body, sometimes leading to low antiepileptic drug concentrations and an increased risk for seizures.

Under the mentorship of Page Pennell, MD, Dr. Voinescu is working to better understand the range and time-course of clearance changes for different antiepileptic drugs during pregnancy in women with epilepsy. Through continued referrals from the greater Boston area and beyond, the team clinically manages a high volume of pregnant patients and is collecting a large body of data on the fluctuations in antiepileptic drug concentrations and disease course throughout pregnancy and the postpartum period. Through this study, Dr. Voinescu and her collaborators aim to further refine the process of epilepsy management during and after pregnancy. They hope to establish a protocol for drug concentration measurements and adequate dose adjustments that would maximize the success in seizure control and improve the safety and quality of life for both mother and child.


UPDATES FROM 2016 TRUSTEY FUND RECIPIENTS

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

What motivated you to enter the field of epilepsy research, and how is support from the Trustey Fund furthering your career?
Building on a long-standing interest in neuropsychiatry and behavioral neuroscience, I entered the field because a significant proportion of patients suffer from psychiatric symptoms, which can be as troubling or more troubling than their seizures. By gaining a better understanding of the ways in which seizures can generate these symptoms, I hope to shed light on the underlying mechanisms of both psychiatric illness and epilepsy. The Trustey Fund has allowed me to obtain critical pilot data to help launch my career as an independent investigator, and I have now been invited to speak about psychiatric and cognitive side effects of antiepileptic medications at the American Epilepsy Society national meeting.

Can you share how your project has progressed in the past year?
We have enrolled 51 patients and expect to continue recruitment through next spring. Preliminary data analysis is encouraging. The Trustey Fund is helping to support a talented Northeastern University co-op student who serves as a contact point for study participants and manages day-to-day operations. Her work is essential to the project and provides her a unique opportunity to learn about the field from patient and clinician perspectives.

How does your project stand to impact our understanding of epilepsy?
Psychiatric symptoms after seizures are extremely common and can have a significant impact on patients’ quality of life, yet we know very little about how to assess risk and need to improve how we address this problem in epilepsy clinics. Through this project, we aim to develop better screening and treatments for epilepsy-related psychiatric issues in order to significantly improve quality of life for patients.

Read more about Dr. Weisholtz’s research: Psychiatric Symptoms in Epilepsy

 

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

What motivated you to enter the field of epilepsy research, and how is support from the Trustey Fund furthering your career?
When young patients with epilepsy “age out” of their pediatric care environment, we frequently rely on parents or primary caregivers to provide relevant history, leaving patients and their families feeling as though they have to “start over” with a whole new provider team. With support from the Trustey Fund, our project aims to bring continuity to this transition, transforming a vulnerable period into an opportunity to harness the rich history from each patient’s pediatric experience and empower young adults to take more responsibility in their care. The Trustey Fund has allowed us to investigate the experience of patients and families transitioning from Boston Children’s Hospital (BCH) to the Brigham and Women’s Hospital (BWH) adult epilepsy clinic, shedding light on opportunities for improvement and building best practices for this critical transfer and transition period.

Can you share how your project has progressed in the past year?
We have recruited nearly all of our control patients and completed three transition clinic visits with patients shifting their care from BCH to BWH. We have several patients who we are hoping to transition in the coming months, and we hope to complete patient recruitment for both study arms by June 2018.

How does your project stand to impact our understanding of epilepsy?
Despite the close physical proximity of BCH and BWH, the process of transferring care has not always been straightforward for patients, their families, and their providers. This project is helping us to better understand the patient experience of this transition, particularly in terms of the common hurdles involved. Ultimately, we aim to find ways to address these challenges, ensuring the best possible outcomes for patients, families, and caregivers, here in Boston and beyond.

Read more about Dr. Fantaneanu’s research: Transitioning from Pediatric to Adult Care

 

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

What motivated you to enter the field of epilepsy research, and how is support from the Trustey Fund furthering your career?
Epilepsy is a poorly understood and debilitating disease, especially in older patients. As the population ages, it is critical that we improve treatment options for these patients, including better methods for detecting seizures and a deeper understanding of how epilepsy impacts cognition and sleep. I have always been fascinated by the relationship between epilepsy and cognition, and the Trustey Fund has allowed me to launch research in this area to address key unanswered questions. As a junior investigator, I am very thankful for this opportunity and view it as a major stepping-stone for me to establish a research career in this understudied area of the field.


Can you share how your project has progressed in the past year?

We have made significant progress, obtaining eight specialized sensors for use in the project and hiring a dedicated research assistant. We have recruited 32 patients and six controls, and preliminary data analysis has already begun. Our plan is to continue recruitment, as a larger number of cases will allow more detailed statistical analysis as we work toward publishing our findings.

How does your project stand to impact our understanding of epilepsy?
The project will help answer key unanswered questions: Do older patients with epilepsy have different sleep architecture? Can epilepsy affect sleep-dependent memory consolidation? Can we detect seizures in older individuals by using wearable sensors? As epilepsy specialists, we tend to focus on the seizures themselves, but do not give as much emphasis to sleep quality and cognitive difficulties in our patients. Findings from this project may aid in improving current clinical practice in these areas.

Read more about Dr. Sarkis’s research: Seizure Detection and Sleep-Dependent Memory Consolidation in Epilepsy

 

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

What motivated you to enter the field of epilepsy research, and how is support from the Trustey Fund furthering your career?
My area of research is psychogenic nonepileptic seizures (PNES), which resemble epileptic seizures but lack their characteristic electrical discharges. The two disorders are closely interrelated, since they commonly co-occur, and many PNES patients are considered epilepsy patients until they receive an accurate diagnosis. Support from the Trustey Fund has been essential to creating new effective interventions for PNES, so we can not only help patients address their symptoms, but also their engagement in treatment and life in general. Developing an intervention for PNES and studying its effectiveness has allowed me to become one of the few pioneers in the understanding of this disorder.


Can you share how your project has progressed in the past year?

In preparation to begin study enrollment, we have hired a research assistant and trained a social worker who will deliver the study intervention. The latter is a key role, as our project aims to evaluate the impact of adding care management to standard treatment, with the hope of enhancing treatment participation and patient outcomes.

How does your project stand to impact our understanding of epilepsy?
The understanding of PNES and the development of effective therapies are in their early stages compared with other neuropsychiatric disorders. Improving this understanding will allow us to enhance treatment and develop urgently needed therapeutic tools for this underserved group of patients.

Read more about Dr. Baslet’s research: Neurological and Emotional Symptoms Program Initiative


HOW TO HELP

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.