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Research Quarterly Research Quarterly A dream you dream alone is only a dream. A dream you dream together is reality. – Yoko Ono In this issue of the Quarterly, we highlight some of the partnerships our research team has developed to make a bigger impact for people with epilepsy. Our research covers the entire spectrum of discovery – from idea to market. We cannot do it alone. On page 2, we provide updates on the Rare Epilepsy Network (REN), a coalition of nearly 30 different organizations working together to facilitate research that improves the outcomes of those living with rare epilepsies. On page 3, clinicians from Thomas Jefferson University Hospital in Philadelphia, PA reflect on how the Epilepsy Foundation’s support early on in their career encouraged them to pursue research within the field. Supporting the development of early career investigators is done in proud partnership with the American Epilepsy Society (AES). This collaborative effort ensures that we can pool our resources, reduce administrative cost and maximize impact. Supporting our professional workforce is one of the ways in which we can ensure that the best and the brightest are tackling the challenges that our community face. We could not do this without our partners at AES. On page 5, we provide staff reports on the conferences attended this past quarter from the Nonprofits Forum at the National Institutes of Health, to meeting new companies at Bio Conference, to facilitating discussions on how medical devices can impact SUDEP and epilepsy care with the Food and Drug Administration. We are creating a research environment in which partnerships spur innovation and exciting discoveries to end epilepsy. To paraphrase Yoko Ono, this dream when dreamt alone is just a dream. But this dream, working with our community, can become reality. Join us. There is room for you. Please visit our website to learn of the exciting initiatives that we have underway. www.epilepsy.com/research Sincerely, Brandy Fureman, PhD VP of Research & New Therapies Page 1 of 8 October 2017, Issue 3 © Epilepsy Foundation of America Research Quarterly Engagement Program Update Rare Epilepsy Network Research Studies Currently For example, the graph below shows the What is the Rare Epilepsy breakdown of associated conditions in Underway: Network (REN)? rare epilepsy subtypes impacting our REN community in addition to seizures. ✓ Understanding the risk factors The Rare Epilepsy Network (REN) for pneumonia in rare is spearheaded by the Epilepsy Beyond Seizures: epilepsies As sociated conditions impacting our REN community Foundation. It is a partnership ✓ Developing a new sleep scale 100 between the Foundation, rare N E R epilepsy organizations, Columbia 80 ✓ Developing a caregiver stress n i s University, and Research Triangle t and benefits scale n 60 a p International (RTI). The network i c i 40 t conducts and facilitates research r Stay tuned for the next quarterly to a P to improve outcomes for people f 20 o learn the results! with rare conditions associated % 0 s h D y n e c m t o with epilepsy and seizures. u e H is ie i s e D t x s s p A u n s Requests for data and new I S / A re e l D A v D p ti a e i rb A D n e studies are being accepted g V o n Goals of the REN C o now! N The goals of REN are to unlock the causes of rare epilepsies, Perhaps not surprisingly, cognitive improve diagnosis (avoiding delay Learn more at https://ren.rti.org issues ranked highest among our and misdiagnosis), treatment and enrolled participants. In the dashboard, quality of life, and find cures. Who is currently enrolled? one can then click on a specific epilepsy subtype to see how the breakdown changes within each group. Who can participate? ✓ 1,314 Participants enrolled across 6 continents You or your loved one may be Go to https://ren.rti.org/dashboard to eligible for the REN registry if a ✓ 39 Rare Epilepsy Subtypes learn more. diagnosis of a rare epilepsy Represented syndrome has been made by a physician. REN Dashboard Commitments of REN To address the urgent health challenges RTI has created a dashboard, of our rare epilepsy community by: which provides an at-a-glance overview of the epilepsy subtypes represented, prescribed ✓ Engaging people living with epilepsy medications, and associated and their care partners conditions with the different ✓ Making data available to disorders. researchers ✓ Investigating causes and The dashboard and comparisons consequences allows one to take a deep dive into a specific epilepsy subtype. Page 2 of 8 October 2017, Issue 3 © Epilepsy Foundation of America Research Quarterly Supporting the Next Generation of Scientists – Making an Impact (The Next Generation Scientists program is a partnership program with the American Epilepsy Society) As Benjamin Franklin famously as “the Merritt-Putnam Fellowship oscillation, which promises less time in said, “Time is money,” and this at the time,” Dr. Sperling says. The the hospital having their epilepsy is even more true for busy grant allowed him to work on a diagnosed and better, more targeted physician-scientists who must project studying hormone release surgical interventions. balance their many clinical associated with seizures, which he completed successfully with responsibilities with hours in the “I’m very, very grateful to the research lab. For Thomas collaborators across the country. Epilepsy Foundation” Jefferson University Hospital “Carrying the project out really doctors, Michael R. Sperling, helped launch my research career.” MD, and Shennan A. Weiss, “That grant lasted two years and really MD, PhD, generous funding allowed me to develop my project, that from the Epilepsy Foundation The grant gave Dr. Sperling the turned into my independent NIH funding not only bought them more than support he needed to spend most of … [it] tested the hypothesis that the brain time for research—it launched his fellowship time on research, and oscillations in sleep and dreaming could their careers. It also led to novel learn how to do research from be used as a way of mathematically lines of investigation and mentors who could train him well. defining the high frequency oscillations discoveries that are still yielding He also credits it with helping him that are associated with epilepsy,” Dr. dividends, providing a better get his first academic faculty Weiss says. understanding of epilepsy and position, creating the foundation better ways to treat it. that led to NIH funding and Because of the Foundation’s grant, and ultimately his directorship of the the connections it fostered for Dr. Comprehensive Epilepsy Center at Weiss—including his mentorship with Dr. “Carrying the project out Jefferson and his current research Sperling—he was able to continue his really helped launch my focus, investigational therapeutics work at the Computational Epilepsy research career.” and outcomes research. Sperling’s Research Lab at Jefferson, which leads colleague Shennan A. Weiss, MD, the field in studying this biomarker and PhD assistant professor in improving its accuracy. Michael R. Sperling, MD, is Neurology – Epilepsy, tells a similar director of the internationally story. renowned Jefferson “If it wasn’t for the Epilepsy Foundation, I Comprehensive Epilepsy would never have been able to pursue “If it wasn’t for the Epilepsy Center and co-editor-in-chief of this work and have the strong Epilepsia, the major Foundation, I would never have mentorship that I did and make the leaps international epilepsy journal. been able to pursue this work” and bounds into pioneering work,” Dr. He established the Center when Weiss says. “I would never have had the he came to Jefferson in 1997, As a resident and fellow, it’s almost time to do the work, I would never have which has grown into one of the impossible to conduct the type of had the support from other physicians premier epilepsy surgery research that I do, which is very and researchers who know the essential programs in the world, with quantitative,” Dr. Weiss explains. details and pitfalls of doing this type of robust academic and clinical “We use custom computer software research. So I’m very, very grateful to programs, and researchers— to analyze very complex terabytes the Epilepsy Foundation.” like Sperling himself—who are of data. It’s not something that a transforming the way epilepsy is clinician in training can easily do in Join the Epilepsy Foundation and the diagnosed and treated. For Dr. their spare time.” American Epilepsy Society in Sperling, it all began with his supporting the Next Generation of epilepsy fellowship at UCLA Scientists. and a life-defining 1984 grant During a two-year fellowship in from the Epilepsy Foundation. epilepsy, also at UCLA, a grant from the Epilepsy Foundation Donate Today My first research grant was from allowed Dr. Weiss to investigate a the Epilepsy Foundation, known biomarker known as high frequency Page 3 of 8 October 2017, Issue 3 © Epilepsy Foundation of America Research Quarterly Epilepsy Innovation Institute Update For many people living with epilepsy, a device would be meaningful to In our 2016 Community Survey, seizure occurs during a certain time of you. Stay tuned to learn more about an overwhelming majority of day or after every couple of weeks. participating in this initiative. respondents, regardless of seizure Understanding these brain rhythms, frequency and type, selected why they happen and how they can unpredictability of seizures as a influence seizure occurrences may be Are you a Researcher? top issue. Many wrote about the key to understanding seizure fear of not knowing when a seizure Clinician? Data susceptibility for the individual will start and not knowing what Scientists? Device triggers the seizure onset. Developer? The My Seizure Gauge You spoke.
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