Front Cover NYUFACES.ORG /FACESFRIENDS /NYUFACES Inside Front Cover TABLE OF CONTENTS SAVE THE DATE 1 Welcome – Letter from the Founder Peace of Mind Lecture 2 The Dr. Blanca Vazquez Summer Camp Anli A. Liu, MD Scholarship Tuesday, September 13th 3 College Scholarship Alumni Hall A 4 Fun Facts 5 Meet Eggroll, My Best Friend and Service Dog freshFACES 6-7 Brain Storms Thursday, October 6th 8-9 Parent Perspective Current at Chelsea Piers 10 -11 2016 FACES Gala Recap 12 freshFACES 2015 Recap 13 Parent Panel at the 2016 FACES Epilepsy Conference Game Day 14 A Marathon for Hope Saturday, October 22nd Introducing the FACES Young The Field House at Chelsea Piers Professionals Support Group 15 The Purple Spoon Presents: Recipes Everyone Will Love 16-17 Wonder About Neurosurgery? FACES Gala 2017 18 SEIZED: Inside the Mystery of Epilepsy Monday, March 6th 19 Different Ages but the Same Disease Pier 60 at Chelsea Piers 20-21 FACES Funded Research Initiatives 22-23 Ongoing Research Projects 24 The FACES Team WELCOME – LETTER FROM THE FOUNDER 2016. A Year. A time of opportunity. A time to reflect. Last year we lost two treasures of our FACES community – Oliver Sacks and Melissa Mathison. Oliver remains a daily inspiration – for all his creativity, his lessons on humanity in a medical world enveloped by technology and metrics – but mainly for the curiosity and wonder and honesty and fun he embodied. His light was brightest when his days were few. Melissa, famous for her screenplay of ET, was known to friends and family as a gentle soul of deep strength and an intense spirit. She knew how to create and how to love. Poignantly, shortly after she was diagnosed with cancer, she read Oliver’s first piece in the New York Times on his imminent mortality, and she ‘lingered long’ on his words. She passed two months after Oliver. They were kindred souls who left a legacy as wide as imagination. 2016. A future of possible. Sudden Death in Epilepsy – SUDEP – remains Two of the newest and most exciting potential an area where FACES has organized the world’s epilepsy therapies were pioneered with NTU/ largest registry as well as a study that spans more FACES leadership. FACES helped to sponsor the than 25 epilepsy centers across 15 countries. We organizational meetings, academic conferences and spearheaded the first collaboration of the epilepsy, partnerships — together with GW Pharmaceuticals medical examiner and epidemiology (Centers for — to move cannabidiol, the major non-psychoactive Disease Control) communities to standardize how compound in cannabis (marijuana), from anecdotal we approach epilepsy-related mortality. FACES possibility to scientific evidence. After more than is also leading the efforts in Sudden Unexplained 2,500 years of using cannabis to treat epilepsy, Death in Childhood (SUDC), which claims the lives of we finally have evidence that one of its major 400 toddlers per year, a third of whom have febrile compounds really helps to reduce seizures in children seizures. with Dravet Syndrome. At the same time, NYU/FACES investigators helped to lead the study that proved Game Day, the Parent Network, our Annual Epilepsy Everolimus, a drug that reverses the metabolic Conference, camp scholarships and college abnormality in tuberous sclerosis complex, reduces scholarships help improve the lives of so many. seizures in patients with this disorder. Clinical care – finding the best therapies and the safest and more successful path forward – remains Two of the most innovative epilepsy therapies in the our core. past decade. 2016. Like so many other years, we should celebrate We remain committed to pushing the envelope our accomplishments, but reflect on the terrible harder with the first ever genetic trial in epilepsy. reality that for so many, epilepsy remains an Ataluren, a drug that can increase expression of unpredictable and disabling disease with too many normal proteins in patients with specific genetic that remain far too common from memory loss to mutations (stop codons), will be tested in patients depression to death. with Dravet Syndrome and CDKL5, rare but devastating genetic epilepsies. Neuroinflammation With your help, we will continue to rudder the future remains a burning topic in epilepsy and NYU/FACES towards a safer and sweeter world for people with is actively collaborating with international colleagues epilepsy. on exploring new therapies and diagnostic tools. The Human Epilepsy Project – the largest collaboration ever focused on patients with focal epilepsy – will help us to understand why some patients have epilepsy which is easily controlled Orrin Devinsky, MD and others face ongoing seizures despite disabling Founder medication burdens. 1 THE DR. BLANCA VAZQUEZ SUMMER CAMP SCHOLARSHIP By Lisa Block ur daughter, Sara, is a very happy and outgoing 27-year-old. She has been attending summer camp since she was 15-years-old. The year before she went to Ocamp she was having a really rough time controlling her seizures. Sara was hospitalized at NYU Langone Comprehensive Epilepsy Center and received outstanding care to get her back on track. While we were there, we met the Parent Network Coordinator, Peggy Guinnessey. In that time frame, I also met a parent named Roseanne. They both encouraged us to consider sending Sara to sleep away camp with the Epilepsy Foundation of New Jersey, Camp Nova. I thought, “how could Sara possibly go to camp when she had so many partial complex Sara Block with her service dog, Brees seizures?” independence, and great friendships. Last year, Sara was able to have her service dog, Brees, tag along Roseanne assured me that Camp Nova had qualified with the campers. The camp was wonderful with the staff trained in seizure first aid – the staff at Camp dog. Nova was able to handle her daughter who was more complex than Sara. My husband and I get a week to ourselves. This means a week without setting four reminder alarms The first year, my husband and I reluctantly dropped to give Sara medicine and not scheduling all meals Sara off at camp and called the facility daily. We were around it. During camp week, we don’t have to follow very worried about how Sara would do away from Sara everywhere watching for the next seizure. I am home. The nurse updated us on how Sara was doing pretty sure we like camp week as much as Sara does. and assured us she was having the time of her life. I sent Sara with a cell phone to camp and she never If it weren’t for the NYU FACES Dr. Blanca called me once. I asked her when I picked her up why Vazquez Summer Camp Scholarship Program, she didn’t call me and she said, “Mom I was having I am afraid we would have never signed Sara up too much fun”, and then started to laugh. for camp. Then we would have never known what a difference a week at camp would make in Sara’s Sara has continued to go to camp throughout the life and in our own. We want to thank all of the years, made friends, and tried activities that were philanthropists who have made FACES the wonderful challenging for her. She loves the zip line, formal organization it is today. Sara, her dog Brees, and the dance time, arts and crafts, bonfire, and award nights. campers at Camp Nova are going to have another The bond between the campers is indescribable. At wonderful summer. Camp Nova, Sara is extremely popular -- she always helps the new campers get acquainted with all the fun things to do there. Camp has helped her gain more self-confidence, a sense of adventure, a love of 2 COLLEGE SCHOLARSHIP By Ryan Quinlan suddenly felt it coming on and screamed, “help”! I slid off of the leather chair and remembered thinking, it’s so slippery, it’s almost like being on a water slide. My family came into the room and saw Ime on the floor. I laid still, except for my head, which was moving up and down and in different directions. I couldn’t talk to anyone but was thinking, why haven’t I passed out yet? I was too scared to close my eyes, so I fought to keep them open and thought, if I keep my eyes open, I could survive this. I have epilepsy and that is what a seizure feels like. When diagnosed, I had seizures on a daily basis and felt the loss of freedom most take for granted. I wasn’t allowed to walk around the block because it was very likely I would have a seizure and put myself in danger. I lost some friends, but it was to be expected in this situation. One of my best friends (at the time) said it was too weird and he couldn’t deal Ryan Quinlan with it. Having seizures shows who your true friends are. Thanks to Dr. Devinsky, who I like to call a miracle Life was unpredictable and although I didn’t know worker, I have been seizure-free for three years what was going to happen, I assumed my situation now. My EEG is completely clear and my dream to would improve. I was wrong; it took a turn for the graduate from college, work hard and make my family worst. I was unhappy and frustrated. One doctor said and the epilepsy community proud of me isn’t so there wasn’t much hope for me and I should get used far-fetched. I want to be an example to so many other to living like this. Medications didn’t work and neither kids suffering from epilepsy and seizures.