2020 Annual Newsletter www.nyufaces.org @facesfriends @nyufaces IN THIS ISSUE: • FACES Camp Scholarship Gives a Sense of Normalcy • So Much More Than A Hotel Room • Coronavirus and Epilepsy Frequently Asked Questions and • A Message to All of Our Game Day Champions What You Need to Know • A Night of Food, Fun, and Fundraising • The Most Successful Gala to Date • Other News and Research Updates! 2020 Save the Dates* FACES Team MEDICAL/SCIENTIFIC Orrin Devinsky, MD COMMITTEE Founder William Barr, PhD Luis Valero Nisida Berberi, MD • Virtual Peace of Mind Lecture Santoshi Billakota, MD Executive Director FACES Forges Forward Series 2020/2021 Judith Bluvstein, MD A Message From Dr. Devinsky, Founder To Be Announced Brielle Cummings, MBA Michael Boffa, MD • Virtual freshFACES 2020 Project Coordinator COVID-19 and the Black Lives Matter monitoring beds in NYC’s academic and private disabilities. His CRISPR-based genome Aviva Bojko, MD movement have deeply changed our world. hospitals. Less than 10 serve the 1.4 million editing has corrected many epilepsy-causing Tentatively, Thursday, October 1, 2020 Peggy Guinnessey, MPH, CTRS Yefim Cavalier, DO Their impacts seemed unimaginable at the people cared for by public hospitals. Without mutations in a petri dish, including these start of 2020. Yet both were predicted by FACES, that number might be zero. In Sunset genes: DHPS, SERPINI1, GRIN2A, SCN1A and • Virtual Game Day 2020 Parent Network Coordinator Harry Chugani, MD Tentatively, Saturday, October 24, 2020 many. And both have relevance for people with Park, NYU-Brooklyn’s epilepsy program, led by TUBB2A. The next step will be to make these Orrin Devinsky, MD epilepsy. COVID-19 established a beachhead in Blanca Vazquez, has 5 full-time epileptologists corrections in a mouse with a human copy of Join our mailing list to be notified when New York City and paralyzed our city beyond serving one of the most ethnically diverse the gene that contains the same mutation as FACES ADVISORY BOARD Sasha Devore, PhD registration is open for these events! Visit: the darkest days of the 1916 polio and 1918 populations in the world with some of the finest our patients. We are also collaborating with Werner Doyle, MD http://faces.med.nyu.edu/mailing-list Katie Boehly influenza epidemics. Then came the murder some of the major research themes in the past scientists in Norway, Israel, South Korea, and Alessandro Borgognone Patricia Dugan, MD of George Floyd. It was another black man decade: expanding our understanding Cambridge, Massachusetts, to develop other killed by a white police officer while three ways to treat genetic disorders. Lawrence Davis Adeen Flinker, PhD of epilepsy genetics and developing other officers watched. A savage crime that • Dr. Judith Bluvstein and I are leading * Please visit the FACES website at Jacqueline French, MD translational therapies, preventing Sudden Orrin Devinsky, MD has galvanized the world against the hate and trials with Fenfluramine for Lennox- nyufaces.org for confirmed dates. Unexpected Death in Epilepsy (SUDEP), and Daniel Friedman, MD racism and brutality boiling within our society Gastaut Syndrome and CDKL5 Deficiency Anna Fantaci developing new antiseizure medications and in many other societies. A tipping point Disorder. Jacqueline French, MD Deana Gazzola, MD alone and in partnership with Jackie French’s against racism. Let’s hope. • Dr. Claude Steriade was recently awarded an Eric Geller, MD Epilepsy Study Consortium, which was itself Robert Hougie AES grant to study the diagnostic accuracy Fortunately, people with epilepsy appear to created with FACES funding. Rina Goldberg, MD of neural surface antibodies as a biomarker Angela Howard have no greater risk of becoming infected or It is easy to fund research; where we differ from for autoimmune epilepsy, a newly identified Stewart Karger David Harter, MD developing serious complications of COVID-19 Want to start your own fundraising many other nonprofits is our goal to create and class of epilepsy that is poorly understood. Biyu Jade He, PhD unless they are in another high-risk group (over campaign? It’s easy! Bill Lambert nurture—as well as fund—research and clinical • Dr. Biyu He has received several large 65 years old, immunosuppressed, or having Teresa Hidalgo, MD trials and to focus and invest our team’s time NSF grants to study the neural basis of 1. Visit http://nyulangone.org/give/ Warren Lammert serious heart or lung disease). People with and effort on projects that can help people. perception and consciousness. Randi Levine Scott Hirsch, MD epilepsy as well as those with developmental fundraise/ • Dr. Gyuri Buzsaki at the NYU Langone Neuro- Manisha Holmes, MD disabilities have also faced stigma and, Some highlights of our research program: Amy Pollner Moritz science Institute and Dr. Anli Liu are leading 2. Click Start a Campaign occasionally, cruelty and death at the hands of • Dr. Adeen Flinker has received several large Katherine Inoyama, MD efforts to harness the power of the brain’s Kate Cooney Picco law enforcement. Many young adults, confused NIH and NSF grants to study how language is 3. Once you are settled on this page, natural rhythms to improve memory and Mary E. Quick Amy Jongeling, MD after a seizure, are assumed to be under organized and encoded. scroll down to where it says FACES stop seizures. Puja Joshi, MD the influence of drugs. If a police officer—or • Dr. Jackie French leads the Human Epilepsy Jot Sandhu • SUDEP research has been a major focus (Finding A Cure for Epilepsy and anyone—attempts to restrain the person, Project trials—with enrollment complete Cassandra Kazl, MD with our NYU team, which has published Seizures) and click it Steven Spiegel they reflexively become agitated and often for HEP 1 (recent-onset focal epilepsy), more than 45 articles on SUDEP. FACES has David Swinghamer Josiane Lajoie, MD combative. This could happen to any person ongoing for HEP 2 (treatment-resistant focal 4. Put in all of the information on the supported the planning and preliminary Karen Lee, MD who is restrained after a convulsion. Several epilepsy), and about to get started for HEP 3 form - title, campaign description, Lucas van Praag data collection for this study; more than 80 people with epilepsy have died in transit after (recent-onset generalized epilepsy). FACES Beth Leeman-Markowski, MD international centers are involved. image [optional], an end date/goal Danielle Walker police handcuffed them while they were in the has supported all these projects and will take amount [optional], and a cover Anli Liu, MD, MA postictal state and lying face down. This is not a lead role in funding HEP 3. Joseph Walsh III Our faculty welcomes two new recruits from photo (FACES uses the purple to compare such a situation with the malicious • Dr. Bijan Pesaran (NYU Center for Neural Leah Weisberg Daniel Luciano, MD our own fellowship group—Dr. Dana Price, evil Mr. Floyd endured, but it was nevertheless Science), Sasha Devore, Werner Doyle, Dan background with the circles) - and Raji Mahalingam, MD a pediatric epileptologist with an interest in Michael Weisberg death due to the ignorance and poor training of Friedman, and I are working to develop novel once you feel as if you answered all genetic epilepsies, and Dr. Jennifer Shum, Daniel Miles, MD those who are there to protect us. Our men and electrodes for patients undergoing epilepsy of the questions as best as you want an adult epileptologist with interests in women in the police force need better training. surgery that would greatly increase our Chris Morrison, PhD surgical epilepsy and using data from invasive them, click the button that says, ability to record from more localized regions Mangala Nadkarni, MD Both COVID-19 and Black Lives Matter are electrode recordings to improve surgical Next Step: Personal Information while also reducing the size and cost of these combining to expose a deep fault in our society— outcomes as well as studying the neural basis Siddhartha Nadkarni, MD electrodes. This should translate into more 5. Fill in your personal information health-care disparities. If you are a minority of cognitive function. informative data from epilepsy surgical on the next page and make sure Heath Pardoe, PhD with epilepsy living in a low-socioeconomic procedures while improving patient comfort None of this would be possible without our Dana Price, MD neighborhood, your lifespan is on average 17 years to remember your username and and reducing inflammation. amazing team—from the FACES leadership shorter than that of peers without epilepsy living password Alcibiades Rodriguez, MD • Dr. Daniel Friedman, together with Tanya and staff to the doctors, nurses, administra- in wealthier areas. This is an invisible tragedy that Spruill in Population Health, is leading our tors, technicians, and many others. But most 6. When you submit your page for Andy Rodriguez, MD few even in the epilepsy field are aware of. efforts to develop tools to help people with importantly you. Your support is our breath. review, email facesinfo@nyulangone. Jennifer Rosenberg, PhD Reducing health-care disparities for minorities epilepsy improve self-management of their org so we can expedite the process Lilian Salinas, PhD with epilepsy remains a clinical and research conditions and mood disorders. As our world faces the challenges of COVID, on our end Rebecca Scott, PhD priority for FACES. More than a decade ago, • Drs. Jackie French, Blanca Vazquez, and racism, and the flagrant abuse of authority, we we funded the first videoEEG unit at Bellevue Claude Steriade are leading a diverse set can only hope that intelligence and kindness 7. Once approved, you will be able to Krithiga Sekar, MD, PhD Hospital—the first and still, by far, the largest of clinical trials to assess new medical can make our world safer, healthier, and log in and see who has donated to Jennifer Shum, MD epilepsy program in any of NYC’s public therapies to treat epilepsy.