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Summer 2010 Volume 23 SUMMER 2010 VOLUME 23 THE MISSION OF faces IS TO IMPROVE THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY EPILEPSY THROUGH RESEARCH, EDUCATION, CLINICAL PROGRAMS, AWARENESS, AND COMMUNITY-BUILDING EVENTS. THE EPILEPSY PHENOME/GENOME PROJECT: TABLE OF CONTENTS A LOOK INTO THE FUTURE by Ruben Kuzniecky, M.D. The Epilepsy Phenome/Genome Project: A look into the future by Ruben Kuzniecky, M.D. When a person is diagnosed with epilepsy, many questions arise: Why A Message from Lisa Millman did this happen to me or my child? Which treatment (or no treatment) is best for me? How long will the epilepsy last? Will any of my children or relatives Volunteer Highlight: be affected with seizures ? Unfortunately, and despite major advances in Sharon Shandler by Marie Pepe medicine over the past decade, many of these questions remain without a clear answer. NYU faces Epilepsy Fellowship: In the spring of 2002, Dr. Dan Lowenstein from UCSF and I had a A Bright and Exciting Future by Siddhartha Nadkarni, M.D. conversation focusing on the major questions daunting the diagnosis and treatment of seizures. What became clear from the onset was that to faces Mitzvahs by Marie Pepe answer these questions, we would need to collect and study in detail a large number of patients. After many meetings and years of planning, the Epilepsy 10th Anniversary Gala Phenome/Genome Project (EPGP) came to fruition. by Linda Azarian EPGP is the largest study ever created to understand how genetics Going Green influences epilepsy type, outcome and response to treatment. This study is by Emily Liedblad funded by the National Institutes of Health/National Institute of Neurological Racing for faces Disorders and Stroke. Researchers from 21 major epilepsy centers around by Robin Dunn Fixell the United States, Canada, Australia and Argentina will collect blood samples A Patient’s Perspective on and detailed seizure histories on a group of people with specific types of Adult-Onset Epilepsy epilepsy. This information will be used to identify genes that contribute to by Cathie Golden a person developing epilepsy A Look into the facesForward and the response to seizure Campaign medications. The hope is that by Emily Liedblad this information will reveal new College Lessons insights, improve diagnosis by Marne Braddock and treatment, and answer the troubling questions described All for Love above. by Linda Azarian (continued on page 3) ATTENTION ALL KIDS! ARE YOU READY FOR A CHALLENGE? Take part in the 2010 faces Lemonade Challenge and raise money for the Dr. Blanca Vazquez Summer Camp Scholar- ship Fund. You can get involved in this fun, summer project from now until Labor Day and we’ll give you everything you need to begin. For more information, log-on to www.nyufaces.org or call us at 646-558-0900. COVER STORY CONTINUED: A MESSAGE FROM NYU faces To understand the complex genetics of epilepsy, EPGP of their study center. Participation does not require travel 223 East 34th Street seeks to enroll 3,000 people who have epilepsy who also to one of the study centers, and participants may receive LISA MILLMAN, EXECUTIVE DIRECTOR OF faces New York, NY 10016 have a brother, sister, parent, or child with epilepsy. The small compensation for their time. (646) 558-0900 study is also enrolling 750 participants who have seizures Greetings from the faces team. The first [email protected] due to infantile spasms, Lennox-Gastaut Syndrome, EPGP is starting its fourth year this spring. It has half of 2010 has been extraordinarily suc- www.nyufaces.org polymicrogyria, or periventricular heterotopia. For this recruited over 2,000 patients so far and we hope to be cessful. Our research agenda continues to second group of people, both biological parents (without able to add new centers and patients to complete the thrive highlighted by the incredibly gener- Founder: epilepsy) are required to participate. We focus on siblings study. EPGP will help shape the future of clinical care of ous $1 million gift from the Shaw Family. and parents because the genetics of epilepsy are complex people with epilepsy. For the project to be successful, This has enabled us to, among other things, Dr. Orrin Devinsky and likely to be regulated by many genes and not it needs to be a strong collaboration among all of the recruit talented new leaders and scientists single gene mutations. It is also the clinical and genetic people with epilepsy in our country. who will advance research initiatives in in- Executive Director: differences between siblings or parent/children that will flamation. We enjoyed our first Parent’s Lisa K. Millman be able to tell us much about why epilepsy may be mild Our dream is that, in the not-too-distant future, we will Network social event, launched faces- or severe in some cases. Although the results of the study be able to do a blood test to test genes so we can tell the Forward - a new online giving campaign - and in March we celebrated our 10th Anniversary Gala where we raised almost Assistant Director of Special will apply to many different people with epilepsy, focusing patient what type of seizures he has, which drug is likely this research effort on very specific types of epilepsy will to be the best. This information would help guide doctors $3.6 million. Large and small, our programs strive to support Events and Communications: our community. allow the genetic analysis to be completed faster. in choosing medications that are more effective and cause Linda Azarian fewer, if any, side effects. And, as summer approaches, it is good to reflect upon the impor- Participating in the study involves blood draw and tant moments from the past six months. Thanks to our Steering Program Coordinator: interviews. Numerous safeguards are in place to protect If you would like more information, please visit our website: Ari Hershey the privacy of participants, and the researchers will not www.epgp.org, or contact EPGP at: 1-888-279-3747, e-mail: Committee, Teen Bowling was introduced and will now become [email protected] or contact Dr. Kuzniecky at 646-558-0802 an important initiative for this population. Not only were we met share personal identifying information with anyone outside by a group of enthusiastic teenagers who were ready to bowl Sr. Recreational Therapist: and have some fun, but it also provided a forum for parents to Peggy Guinnessey meet and chat about their shared experiences. Most important- ly, new friendships were forged with each high five after a strike by RubenGOING Kuzniecky, GREEN M.D. b y Ruben Kuzniecky, M.D. by Ruben Kuzniecky, M.D. by Ruben Kuzniecky, M.D. or spare. Sometimes, when we are working on the bigger events and conferences, we forget to take a step back and realize that by Emily Liedblad from the JAR Group faces is about individual moments - one person, one family and one story at a time. Each is unique and always inspires. Parent’s Network Program faces is turning a new leaf! In an effort to our mission. The Parent’s Network Program offers support dedicate more of our resources towards By swapping mailbox for In the summer issue of the faces Newsletter, I’m pleased to in- for parents with the many challenges troduce you to some extraordinary people who are making a dif- surrounding care for a child with epilepsy. funding faces programs, we are moving to an inbox, you are helping to ference and helping to advance the faces mission. We meet electronic newsletter...and a greener planet! support faces research, children and adults, doctors and volunteers who all make up the The Network gives families From now education, advocacy, and fabric of faces. Every story should be celebrated as each ac- much-needed information on a variety of subscribe to our complishment makes our work possible. topics ranging from: on, we will be e-mail newsletter and community outreach. EDUCATIONAL SERVICES sending an We’ve already been able Over the next few months, I ask you to devote a few moments put $2 back towards HOSPITALIZATION email newsletter to return thousands of dollars back to faces - reach out to us, send us an email, share your story, SOCIAL SUPPORT RESOURCES our mission let us know how we can better involve you with our efforts. Tell to all current to the programs that matter. Plus, us about your successes and challenges and we will do what we Would you like to be a part of our network program? subscribers with email newsletters allow us to keep can to help: we are a part of a shared community and our goal is Would you like to get in contact with a support parent? Interested in becoming a support parent? an email address in our system. If you haven’t you up-to-date on all important faces news to find ways to make a difference. provided us with your email address you’ll and events. You can do your part to support I wish you a happy and healthy summer filled with new adven- still receive our newsletters via mail; however, our environmentally-friendly communications tures and lots of quality family time. there are plenty of good reasons to opt into efforts by subscribing to our email newsletter our e-newsletter! online at http://faces.med.nyu.edu/ For every electronic newsletter conversion or webform/faces-contact-form or by sending For more information, please contact the faces sign-up, faces is able to put $2 back towards your email address to [email protected]. office at 646.558.0900 or [email protected] 2 3 NYU faces EPILEPSY FELLOWSHIP faces MITZVAHS by Marie Pepe A BRIGHT AND EXCITING FUTURE There are many young men and women who Ashley Arnold is a budding entrepreneur and by Siddhartha Nadkarni, M.D., Assistant Professor of Neurology; raise money for faces as part of a community has made eye-catching note cards as a Bat Program Director, Clinical Neurophysiology Fellowship service project, which is both charitable and Mitzvah project to also raise funds for faces.
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