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Research Quarterly RESEARCH Q UARTER LY ISSUE 10: JUNE 2019 Shark Tank Awards Innovator Spotlight Series NextGen Scientist Awards Clinical Trials THERE ARE NO RULES“ HERE – WE’RE TRYING TO ACCOMPLISH SOMETHING – THOMAS A. EDISON” WELCOME LETTER With thirty to forty percent of those living with epilepsy being treatment resistant and living with persistent seizures, something radical needs to be done. We need to find new therapies and new innovations that revolutionize the diagnosis, care and treatment of epilepsy. In the June Research Quarterly, you’ll meet entrepreneurs who participated in our Shark Tank event, our early career awardees representing the next generation of scientists, and parents who started companies to tackle challenges that their families are facing. The creativity and problem-solving capabilities of our community are amazing. Through the Research and New Therapies programs, we are creating opportunities for our community to put those problem- solving capabilities to work. The Foundation is building a stellar track record in supporting epilepsy solutions getting to market. In the last two years alone, five products that received seed funding by the Foundation have reached the marketplace and received regulatory approval including UNEEG Medical (CE approved 2019), Embrace (FDA approved December 2018), Epidiolex® (FDA approved July 2018), Visualase (FDA approved April 2018) and Zeto (FDA approved April 2018). However, our work is not done. As Thomas Edison, arguably one of the most prolific inventors of the last century, once said, “There are no rules here – we’re trying to accomplish something”. If you have a unique solution that could transform the epilepsy community, we want to hear from you. Please submit your idea through our Shark Tank Awards or Commercialization grants! If you are early on in your career, consider submitting to the American Epilepsy Society (AES) early career funding program. Please go to epilepsy.com/research to learn more Kind regards, Brandy Fureman, PhD VP of Research and New Therapies www.epilepsy.com/research Cover Page: Six of the ambassadors for our Let’s Use Our Brains to END EPILEPSY® initiative represent our key stakeholders — individuals with epilepsy, parents, advocates, doctors, activists, staff, volunteers, and donors. The word in the Brain Line Art illustrates one way they are using their brains to END EPILEPSY. This overarching campaign draws attention to the fact that the brain is the source of epilepsy and the brain is the source of the solutions to END EPILEPSY. Credit to Saber, the Artist+Activist, who drew the original art for the Brain Line. Please visit EndEpilepsy.org and create your Brain Line Art. 2 RESEARCH QUARTERLY | JUNE 2019 SHARK TANK AWARDS #EPILEPSYSOLUTIONS In 2019, 35 individuals or teams entered the competition from across the United States and 8 countries around the world. From this pool, 5 teams were chosen as finalists. The finalists presented on May 24, 2019, at the 2019 Antiepileptic Drug & Device (AEDD) Trials Conference in Florida. 2019 Shark Tank Competition Winners $75,000 AUDIENCE CHOICE AWARD AND $75,000 JUDGES AWARD Inspired by the TV show Shark Tank, finalists give DETECTING SEIZURES WITH AN a 5-minute pitch to our judges about why the EYE-OPENING SOLUTION Foundation should invest in their idea to solve Rachel Kuperman MD the challenges that people living with epilepsy CEO OF EYSZ, INC. face every day. The audience also gets to vote on their favorite project to fund. Thus far there has Dr. Kuperman’s mission is to give clinicians and been a wide range of novel concepts presented patients the tools they need to improve outcomes ranging from: and quality of life. The Eyzs solution will help provide specific, sensitive means for detecting • therapeutic devices, seizures through eye-tracking, a relief from EEG • seizure alert and self-management systems, monitoring currently needed to detect seizures and • devices that prevent personal injury from seizures, seizure-related events. Dr. Kuperman’s desire to • a public awareness campaign abroad. bring this project was motivated by the families she cared for during her ten years of clinical practice Winner(s) of the competition walk away with at the University of California San Francisco designated funding, ranging from $50,000– (UCSF) Bennioff Children’s Hospital as a pediatric $200,000, to help in the development and epileptologist. commercialization of a new product, technology, or therapeutic concept that support our epilepsy With this project, Dr. Kuperman plans to develop community. and deploy 100 eye-tracking wearables that will be used in a clinical study at UCSF. The clinical study will refine the wearables’ patented seizure- detection algorithm for absence seizures. 2019 Shark Tank Competition Winners and Finalists R. Kuperman J. McNannay M. Musser A. Turabi S. Chiang R. Moss H. Daneels B. Vandendriessche RESEARCH QUARTERLY | JUNE 2019 3 $50,000 JUDGES AWARD seizure diary data to estimate a patient’s current FALLING DOWN THE RABBIT HOLE OF level of seizure risk. This data can be sent to both MEDICATION ADHERENCE the user and their clinicians’ electronic health Jody McNannay record (EHR) system and can be diary agnostic. Co-Founder, Curadite, Inc. • This project will carry out an extension of the and parent of a daughter with epilepsy EpiSAT algorithm. The extension will increase Curadite plans to optimize its innovative medication flexibility to accommodate large scale EHR management platform for the epilepsy community. data. EpiSAT will also be deployed as a clinical The platform incorporates intelligent packaging, decision support tool for beta testing with patient reminders, and a clinician dashboard. SeizureTracker.com. Jody brings her experience as a mother of a child with epilepsy to the project. She has experienced SENSOR DOT: LOGGING SEIZURES AND firsthand the difficulty of managing medication EPILEPSY BIOMARKERS AT HOME adherence and transitioning responsibility for Hans Daneels PhD medicine regimens to her daughter as she grows CEO and Co-Founder, ByteFlies older. Benjamin Vandendriessche PhD The Curadite platform provides timely support Chief Medical Officer, ByteFlies for individuals with epilepsy. It also alerts care teams when loved ones are struggling to take • ByteFlies has developed Sensor Dot, a tiny medication as prescribed. Shark Tank funds will wearable that can continuously monitors be used to develop and customize the platform the cardiovascular, respiratory, nervous, and assisting with medication management. They will musculoskeletal systems. Sensor Dot can record also work closely with their research partner to brain activity (EEG), heart rate, activity and complete the pilot design and recruit the clinicians, motion, respiration, electromyography (recording patients, and care teams needed for the pilot. of the electronic activity of muscle tissues), and electrodermal activity. Shark Tank Finalists • ByteFlies also encourages clinicians and researchers to connect with their developing SEIZE THE WHEEL: IMPROVING PATIENT platform to build novel applications that can CARE THROUGH VR help people with epilepsy. Matthew Musser CEO & Founder, Seize the Wheel Shark Tank Judges Areeba Turabi CTO, Seize the Wheel Thank you to the Epilepsy Foundation of Minnesota for supporting this event and to our 2019 Shark • A virtual reality driving simulator, coupled with Tank judges! the diagnostic abilities of an EEG, that allows • Page Pennell MD, Professor of Neurology, physicians to determine the level of consciousness Harvard Medical School, Director of Research, of patients during short epileptic discharges. Division of Epilepsy, Brigham and Women’s • The simulator will help doctors make more Hospital, Boston, MA informed decisions with patients about day- • May Liang, Co-Founder, General Counsel and to-day activities like driving and medication Chief Financial Officer, OpenConcept Systems, Inc. managements. • Terrence O’Brien MD, Professor of Medicine, Department of Neuroscience and Medicine, EPISAT: AN EHR-INTEGRATED CLINICIAN DECISION SUPPORT TOOL FOR DETECTING Monash University, Australia SEIZURE RISK • Tracy Dixon-Salazar PhD, Director of Research Sharon Chiang MD, PhD and Strategy, LGS Foundation Neurology Resident at the University of • Timothy Feyma MD, Gillette Children’s Specialty California, San Francisco and creator of EpiSAT Healthcare Robert Moss Do you have an idea for the next Shark Tank? Co-Founder of Seizure Tracker Submissions will open in the fall of 2019, with the finalists presenting at 2020 Epilepsy • EpiSAT is an algorithm that has been developed Foundation Pipeline Conference in Santa Clara, CA. in collaboration with SeizureTracker.com. It uses www.epilepsy.com/sharktank 4 RESEARCH QUARTERLY | JUNE 2019 UPDATE FROM 2018 SHARK TANK WINNERS 3D MACHINE VISION SYSTEM FOR SURGICAL VIRTUAL REALITY MEDICAL SIMULATION NAVIGATION OF THE HUMAN BRAIN FOR THE MANAGEMENT OF STATUS EPILEPTICUS Aaron Bernstein PhD President and CEO, Advanced Scanners Joshua M. Sherman MD Faculty Attending – Division of Emergency Jeff Levine MIM, Advanced Scanners Medicine, Children’s Hospital Los Angeles Open resective brain surgery for epilepsy begins Todd Chang MD, MACM with the surgeon creating an opening in the skull. Assistant Professor of Pediatrics, USC-Keck The surgeons rely on image-guided navigation School of Medicine systems to guide their movements within the brain. These navigation systems rely on previously Drs. Sherman and Chang develop virtual reality scanned images of the patient’s
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