With regards to research, The Epilepsy Foundation’s vision is to create a world without epilepsy and lives free from seizures and side effects. Their purpose: to accelerate the development of therapies for people living with epilepsy. The Foundation’s dedication to research is obvious. From their stretch to 6 continents to their funding provision of research of over half the therapies in the clinical pipeline. From genetic therapies & pharmaceuticals to devices & detectors. Read more about their commitment, new therapies, clinical trials and more!
Read the Epilepsy Foundation’s very first issue of the Research Quarterly published March 2017.
Research in Our Region
The Rush University Medical Center laboratory of Marvin A. Rossi Website (http://www.synapticom.net/) as follows: RUSH University Medical Center, Principal Investigator, Marvin A. Rossi, MD, PhD has been awarded a $168,649 two-year grant from Upsher-Smith Laboratories. This grant is in collaboration with the Epilepsy Foundation of North Central Illinois, Iowa and Nebraska, to further develop a population health management initiative based in McHenry County, IL. A significant number of individuals diagnosed with uncontrolled epilepsy are underserved and diagnosed with co-occurring mental health conditions. A primary aim of this grant is to implement transformational comprehensive care for adults with uncontrolled epilepsy and closely-associated mental health challenges living in Northeastern Illinois. The grant provides an ability for the RUSH Epilepsy Center, and Dr. Marvin A. Rossi MD, PhD to develop and implement a game-changing mobile technology-rich and patient-centered healthcare delivery model for chronic epilepsy care in Northeastern Illinois.
The Epilepsy Foundation has established an independent community-based coordination hub in Crystal Lake, Illinois funded by the Mental Health Board of McHenry County. This office is designed to facilitate access to mental health-related community resources, telemedicine-linked epilepsy expertise at RUSH University Medical Center and video-visit medicine reconciliation services from registered pharmacists, and ‘on-demand’ animation-rich educational videos for adults and their caregivers. McHenry community-based psychosocial agencies are included in this study. Such a community-based healthcare management system is necessary to accommodate increased numbers of individuals without increased costs, now accessing healthcare by way of the Affordable Care Act. As importantly, this study aims to provide clarity regarding how to reduce hospital admissions and healthcare-related costs for these individuals. The Centegra Healthcare System Emergency Services Network was chosen as the collaborating study site. This study will set the stage for replicating such a model throughout Illinois. The study is expected to continue through 2017.
Epilepsy Foundation Awards Research Grant in the Amount of $50,000 to Explore Prevention of Sudden Unexpected Death from Epilepsy (SUDEP)
Monday, February 8, 2016
Iowa City, Iowa – The Epilepsy Foundation announced the award of their “Targeted Research Initiative for Morbidity and Mortality” grant for $50,000 to Dr. Gordon Buchanan MD, PhD, of the University of Iowa. The funds will aid in the research and development of methods to prevent SUDEP (Sudden Unexpected Death in Epilepsy).
SUDEP is the leading cause of death in patients with refractory epilepsy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP and if seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150. These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures.
The University of Iowa grant will explore strategies designed to help medical professionals gain a better understanding of ways to prevent SUDEP. Key factors will be explored to help provide more insight on the impact of breathing during a seizure with the goal to stop respiratory arrest.
Dr. Buchanan: “With SUDEP being the leading cause of death in patients with refractory epilepsy, SUDEP is an important public health problem. Many of my own patients have heard about SUDEP and are afraid that it could happen to them. Thus it is important to learn more about SUDEP to identify ways to prevent it. As a scientific community we have learned that SUDEP often occurs due to a seizure causing breathing to stop. However, we know fairly little about how seizures cause breathing to stop. Consequently we do not have good measures to prevent this. Support provided from this grant will allow our group to explore a role for a novel mechanism is seizure-induced respiratory arrest and hopefully lead to identification of a novel preventive strategy for SUDEP.”
Roxanne Cogil, Director of Iowa Epilepsy Services, Epilepsy Foundation of North Central Illinois, Iowa, Nebraska: “There are certain populations of people with epilepsy who are at higher risk for SUDEP and since there is no known cure for epilepsy, the research is extremely important to help figure out the mechanisms of SUDEP in order to learn how to prevent it and save lives.”
Additional Research & Advocacy Organizations & Resources
Epilepsy Foundation, the U.S. national organization that works for people affected by seizures.
Alliance for Epilepsy Research a grassroots advocacy organization formed to encourage and support innovative medical research for Epilepsy.
CarpeDB is a dynamic epilepsy genetics database sponsored by a National Science Foundation CAREER Award and the Department of Biological Sciences at The University of Alabama.
Epilepsy Therapy Development Project advances new and innovative therapies for people with epilepsy.
Citizens United For Research In Epilepsy is a grassroots advocacy organization raising funds and promoting a cure for pediatric epilepsy.
Parents Against Childhood Epilepsy is an organization that provides support for parents of children with epilepsy.
Center Watch is a comprehensive list of epilepsy clinical studies going on throughout the United States.
The Epilepsy Study Consortium is a group of scientific investigators from academic medical research centers who are dedicated to accelerating the development of new therapies in epilepsy to improve patient care.