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ANNUAL NEWSLETTER 2015 FEATURING » FACES Gala 2015 » Shining a Light: SUDC » Freshfaces Cocktail Party » a Prom for Everyone .............................................................ANNUAL NEWSLETTER 2015 FEATURING » FACES Gala 2015 » Shining a Light: SUDC » freshFACES Cocktail Party » A Prom For Everyone WWW.NYUFACES.ORG LIKE US ON FACEBOOK.COM/FACESFRIENDS FOLLOW US ON TWITTER.COM/NYUFACES 106544_FACES_2015_NL.indd 1 6/29/15 10:13 AM THE FACES TEAM TABLE OF CONTENTS BOARD OF ADVISORS Todd Boehly 1 Welcome Lawrence Davis 2-3 Recognizing FACES Orrin Devinsky, MD 4 Blurbs From the Board Harry Falk 4 Attitude of Gratitude Anna Fantaci Jacqueline French, MD 5 Epilepsy Conference Stewart Karger 6-7 Gala 2015 Carolyn Kotler 8 freshFACES Ruben Kuzniecky Bill Lambert 9 Fundraising Corner Warren Lammert 10 TeamFACES Marathon Success Randi Levine 11-12 FACES Research Projects Howie Lipson 12 Teen Day Veronica Mainetti Melissa Mathison 13 Meet the Neuropsychologists Amy Pollner Moritz 14-15 Shining a Light on the Unknown: SUDC Kate Cooney Picco 16 Antiepileptic Drugs and Device Mary Quick Trial Meeting XIII Steven Spiegel David Swinghamer 17 The Purple Spoon Lucas van Praag 18-19 FACES Apartments: A Place That Joseph Walsh III Feels Like Home Leah Weisberg 20 Dr. Blanca Vazquez Summer Camp Michael Weisberg Scholarship Story: Meet Joshua STAFF 21 Houston’s College Scholarship Story 22 A Prom For Everyone Orrin Devinsky, MD Founder 23 A Parent Perspective Pamela B. Mohr 24 The Magic Pill For My Epilepsy Executive Director Luis Valero Associate Director THE MISSION OF FACES Alyssa Giorgio & Marisa Maltese THE MISSION OF FACES is to Event Managers improve the quality of life for Rebecca Kornstein all people affected by epilepsy Project Coordinator through research, education, Heather Wall Coordinator of FACES clinical programs, awareness Apartments, Scholarship and community building events. Programs & Insight Newsletter 106544_FACES_2015_NL.indd 2 6/29/15 10:13 AM WELCOME LETTERS FROM LEADERSHIP FACES is all about the people we care for. Our community FACES supports the tremendous work of the medical of doctors, nurses, neuropsychologists, technicians, and team here at the Comprehensive Epilepsy Center at NYU administrators at NYU Langone and our wider community Langone Medical Center. of collaborators in epilepsy care around the world. On Monday, March 2, 2015, FACES celebrated our annual Our research program is robust and exciting. We are Gala at Chelsea Piers in Manhattan. Over $4.9M was raised exploring new genetic therapies for epilepsy, novel to provide for life-enhancing programs in cutting-edge compounds that work ‘outside the box’ of usual epilepsy research, clinical care, education and awareness programs, medications - targeting immunological mechanisms and community building events. underlying epilepsy and novel neuronal systems. Our pioneering research on the safety and efficacy of pure TeamFACES continued its athletic streak with 7 runners cannabidiol (CBD) in children and young adults with raising $118,00 - $51,000 more than last year – for the NYC treatment resistant epilepsy has garnered national Marathon. In March, 5 runners raised just over $25,000 for attention and we are now leading the first scientifically the NYC Half Marathon and we already have 12 runners controlled trials of CBD in Dravet Syndrome and Lennox registered for the 2015 marathon! Two runners ran the Gastaut Syndrome. Our surgical teams are developing Boston Marathon, raising just over $20,000. We are so novel methods to treat epilepsy and are attracting a larger proud of all of our FACES athletes and are thrilled with and wider referral base of the most difficult-to-treat cases. the popularity of this new program. The arrival of spring Through the North American Sudden Death in Epilepsy also brought the Epilepsy Conference on Sunday, April 26, Registry (SUDEP) collaboration with the NIH Center for 2015 at NYU Langone Medical Center. Over 400 patients, SUDEP Research, and a new international program to caregivers, parents and medical professionals attended to study risk factors for SUDEP, we are intensely focused on learn about the latest developments in the epilepsy field. reducing epilepsy-related mortality. Our collaboration with the Center For Healthful Behavior Change at NYU has Our FACES Apartments provided lodging for 73 families led to work with the Centers for Disease Control to reduce from 24 states and 2 countries. The length of stay per family disparities in epilepsy care for those who have less financial ranged from 1 day to 8 weeks and a total of 567 room nights resources. There are so many new projects, like, improving were provided throughout the calendar year. memory through transcranial magnetic stimulation to unraveling the genetics of epilepsy and studying devices to FACES is happy to extend an opportunity for children to detect seizures and alarm caregivers. Collaborations within attend summer camp and college through the Dr. Blanca the NYU Langone and Downtown campuses and with Vazquez Scholarship and our College Scholarship programs. international colleagues have allowed us to focus deeply on This year 40 children were awarded a total of $26,000 in specific projects while diversifying our research efforts. camp scholarship dollars and last year 15 students were awarded a total of $25,000 in college scholarships. The We are also proud of our FACES program. The Annual 2015 college scholarship program application deadline is Epilepsy Conference is one of the largest in the world. The July 15th. FACES kicked off their 3rd annual Teen Program annual newsletter and monthly e-newsletter are read by on June 6th with a movie, tour and lunch at The American more than 12,000 people. Game Day at Chelsea Piers brings Museum of Natural History in Times Square. Don’t forget families together for fun and our Camp Scholarships bring to hold the date for Game Day, which will take place on the joy of friendship for campers and respite for parents. Saturday, October 24, 2015. The fall will bring a new set The College Scholarship program awards much needed of Peace of Mind lectures – and we would love to hear the funds to students with epilepsy. This is thanks to the topics that interest you the most. incredible support we have received. Finally – SAVE THE DATE for our second annual It is always worthwhile to reflect and look back. Reflecting freshFACES event on Thursday, October 8, 2015. This fills me with a sense of honor to be part of this amazing fundraiser and cocktail party will be held at espace in community, and it fills me with a hunger to do more, since Manhattan and is sure to be the talk of the town. our goal of significant progress towards a cure for epilepsy remains far too elusive. The FACES team is always here to be of assistance. Please do not hesitate to contact us. Orrin Devinsky, MD Founder Pamela Mohr Executive Director 1 106544_FACES_2015_NL.indd 3 6/29/15 10:13 AM .............................................................RECOGNIZING FACES By: Robin Dunn Fixell It has been two decades since the inception of FACES with outstanding scientists, both at NYU Neuroscience at the NYU Langone Comprehensive Epilepsy Center Center and NYU Downtown.” and, in light of the fact that it has done so much for so many during the past 20 years, there’s no better time Today, education remains a top priority for FACES. “We to illuminate its history and future potential. Dr. Orrin have multiple individual conferences and, perhaps, Devinsky, Director of the NYU Langone Comprehensive one of the world’s largest lay conferences for people Epilepsy Center, recently sat down and discussed the with epilepsy,” stated Dr. Devinsky, as well as “a past, present and future of this remarkable organization. newsletter which disseminates a lot of epilepsy-related information.” In addition, he pointed out that there has Created in 1995, FACES originally referred to the “Fight been a great deal of support for community groups— Against Childhood Epilepsy and Seizures.” Through the adolescents, summer campers and college students. years, as FACES grew more ambitious and broadened its efforts to serve the community, foster fundraising and “Clinical care and research probably remain the two pursue research, the acronym came to stand for “Finding centerpieces of what FACES supports,” said Dr. Devinsky. a Cure for Epilepsy and Seizures.” “We pay for a dietitian and the full dietary program we have here, but it also supports people in many other “FACES really came out of the collective questions and states and countries who are seeking epilepsy dietary desires of people we cared for in the Epilepsy Center to care.” Just one of the many programs offered by FACES do more,” explained Dr. Devinsky. “And they suggested includes providing apartments to out-of-town families we organize a meeting to look at ways to increase the visiting NYU for surgery, specialized treatments or advocacy, education, research and clinical programs of evaluations. the NYU Langone Comprehensive Epilepsy Center.” “Most importantly,” emphasized Dr. Devinsky, “FACES Today, at least half of the 20 or so individuals who supports a very wide portfolio of basic and clinical attended the first meeting that gave rise to FACES research efforts that are geared in epilepsy and they are remain active supporters. Steven Spiegel, for example, especially targeted on finding discoveries that we hope is currently a board member; and Hugh Hildesley, of will impact people’s lives in the near future.” Sotheby’s, was not only instrumental in retaining this prestigious institution for FACES’ first fundraiser, but But what makes FACES unique as an epilepsy and seizure continues to serve as auctioneer at FACES’ galas and organization, Dr. Devinsky explained, is that while “it remains a dedicated supporter. Stone Phillips, first is primarily focused on patient education, care and fundraiser host and MC, has returned numerous times in research programs here at the NYU Langone School of that capacity; he and his wife are active supporters. Medicine, FACES also has very active collaborations with more than 30 epilepsy centers throughout the world, According to Dr.
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