Fall/Winter 2004 - FACES (Finding a Cure for Epilepsy and Seizures)
Transcription
Fall/Winter 2004 - FACES (Finding a Cure for Epilepsy and Seizures)
Fall/Winter 2004 Volume 14 The mission of faces is to improve the quality of life for all people affected by epilepsy through research, education and awareness, and community-building events. Contents Volunteer Corner ................4 Marketing Task Force Educates the Public About Epilepsy Epilepsy Phenome Genome Project Report ..................5 -Strives to Reduce Stigma Towards the Disorder Announcements ..................2 faces News .........................3 How Does Epilepsy Progress Over Time? ......................6 Research .............................7 Art Day ...............................8 BBQ and Pool Party ...........8 Game Day ..........................9 Christmas Spectacular ........9 Talking to Your Child About Epilepsy .........................10 Donations .........................11 Upcoming Events .............12 NYU Contact Information ....................12 The faces newsletter is edited by Christine Toes and Melissa Murphy with support from Daniel Miles, M.D. and Ruben Kuzniecky, M.D. “No spoons,” “Seizures are a part of someone’s life, not someone’s life,” and Chris Evert. What do these three things have in common? This spring, faces organized a Marketing Task Force that developed three strong Public Service Announcements (PSAs) in just seven months. Better yet, every PSA was done pro-bono with the time and talents of the eleven dedicated members of the Task Force: Dr. Blanca Vazquez, Deborah Coble, Kara Flinn, Debbie Josephs, Tim McCarthy, Lisa Orban, Marie Schu, Richard Shane, Amy Steinman-Cohen, Phil Taggert, and Christine Toes. Kara Flinn of Lyons Lavey Nickel Swift, developed the “no spoons” PSA continued on page 7 Steering Committee Chair Orrin Devinsky, M.D. Program Coordinator Christine A. Toes Program Assistant Melissa Murphy Lisa Altimari Jeff Benowitz Brendan Byrne Margot Chvatal Kate Cooney Picco Larry Davis & Donna Emma Sharon & Peter Donovan Judy Ebner Harry Falk Anna Fantaci Colleen Farrell Jane Gilbert Peter & Kathy Gogolak Elizabeth Jarvis Lynn & Noel Jeffrey Lisa Krebs Borgen Ruben Kuzniecky, M.D. Warren & Kathy Lammert Leonard & Marilyn Lehrer Randi & Jeff Levine I.D. Luckower Leila Mansouri Amy & Seth Markowitz Karen & Jeff Mayerson Anne Metcalf Mary Miceli, RN Daniel Miles, M.D. Elizabeth Millstein Nancy Novograd Lawrence & Gaye Pecker Sharon Perhac Jaimee Sabato Mame Kennedy Schrager Richard Shane Remi Silverman Leslie Smith Stevie Solomon Candice Stark Amy Steinman Cohen David Swinghamer Blanca Vazquez, M.D. Leah & Michael Weisberg Neil & Stacey Weiss Richard Wheeless Donations to faces support epilepsy research and programs for children and teenagers affected by epilepsy. All donations are tax-deductible. Please e-mail your questions about faces to facescoordinator@yahoo.com. 2 Announcements New Staff Members The NYU Epilepsy Center and faces would like to welcome Dr. Sathyashankar Subbanna to the NYU team. Dr. Subbanna will be working at the Epilepsy Center as a research scientist. He is an American Board Eligible Clinical Neurologist with an additional one-year of clinical Neurophysiology fellowship, which was completed in the NYU Medical Center Neurology program. Dr. Subbanna is highly interested in research related activities and has recently switched from clinical practice to a full time research position. He feels that his abundant exposure to clinical neurology over the past six years will be very useful during his new position in research. We are also very pleased to announce the appointment of Ms. Erica Metzger-Hare to the position of Epilepsy Service Line Manager of NYUHC. Erica has an MBA in Economics and Management from NYU’s Stern School of Business. In her new position, Erica will be responsible for ensuring that the operational and financial goals established for the Epilepsy Center are met. is National Epilepsy Month What can you do to educate people about epilepsy? $5,000 High School Scholarship! The Anita Kaufmann Foundation, in conjunction with faces, is offering scholarship funds for high school juniors and seniors that want to make a difference in their community. The goal is to teach high school students not to fear epilepsy. First Prize $5,000 Second Prize $3,000 Third Prize $1,000 And More! Visit the Anita Kaufmann website for further information. www.theanitakaufmannfoundation.org The deadline is January 31, 2005 faces News…. The holidays are rapidly approaching! Holiday Wish List The faces apartments are available free of charge for families who have traveled far distances for epilepsy treatment at NYU. The apartments benefit more than 30 families each year and are funded by faces and a grant from KiDS at NYU. This holiday season, faces created a “wish list” on Target.com. If you would like to make a donation to the faces apartments, please visit www.Target.com. The wish list can be found by following a few easy steps. First, locate the wish list under “gift registry” found at the top of the Target web page. Second, you will be asked to enter a name under “Club Wedd,” please enter Melissa Murphy to gain access to the list. Also, the faces apartments are in need of DVDs. Please contact Melissa if you would like to donate DVDs to the apartments or if you have additional questions at 212.779.2080. To the Editor, My name is Allison Clarke and I am conducting research under the supervision of Dr. Christine Critchley and Dr. Roslyn Galligan in the School of Behavioural Sciences, towards a Doctorate of Psychology (Health) degree at Swinburne University of Technology in Victoria, Australia. My study examines differences in how young people live with Epilepsy. The results of this research will help in designing programs that can help better meet the needs of young people who have Epilepsy. Participants may be male or female, between the ages of 10 and 24 years. If you or someone you know would be interested in participating please go to the web survey at http://www.ozinfo.com.au/acepl.htm. If you would like more information, you can email me at allison.lclarke@BIGPOND.COM. Bentley Golf Classic The NYU Comprehensive Epilepsy Center and faces would like to thank Bentley Long Island for donating $32,000 of the proceeds from their golf outing to NYU-faces. A special thanks to Randi and Jeff Levine for their support of the event! Did you miss the NYU Epilepsy Conference? The Saturday, October 16, 2004 NYU-faces conference, “Epilepsy Update: 2004” was attended by a record crowd of nearly 400 people. The lectures, handouts, speaker bios, and course evaluations are available for download at www.nyufaces.org. 3 VOLUNTEER CORNER faces Volunteers of the Quarter faces would like to extend a special thank you to Hsiaolei Miller, Stephanie Vaiano, Jessica Levine, and Michelle Murphy for their many hours of hard work! Hsiaolei Miller Stephanie Vaiano and her mom, Joanne Jessica Levine faces Respite Care Volunteers Needed Are you kind and compassionate? Michelle Murphy Do you have a few hours to spare? We are looking for volunteers to provide respite care to parents whose children are undergoing epilepsy treatment at NYU. To volunteer, you would meet with the NYU Volunteer Services office, and schedule two TB tests. The hours you volunteer are based on your availability. Please call 212.779.2041 or email facescoordinator@yahoo.com if you might be interested in applying for this volunteer position. faces The Gala is being held on Monday, April 4, 2005 at Pier 60 at Chelsea Pier. If you have great computer and phone skills and are interested in volunteering please email Christine at facescoordinator@yahoo.com. Volunteers will work in conjunction with the NYU Office of Special Events. For more information on the faces Gala go to the Upcoming Events page of www.nyufaces.org. 4 EPILEPSY PHENOME GENOME PROJECT (EPGP) REPORT By Ruben Kuzniecky, MD The EPGP continues to move forward. A grant request for $25 to $30 million dollars will be submitted in February of 2005 to the National Institute of Health (NIH). The EPGP includes 12 epilepsy centers and will be the largest coordinated study of a large sample (~5,000) of epilepsy patients and control subjects (~10,000). EPGP strives to identify the mechanisms that underlie epilepsy and why some therapies work for some patients but not others. On a very positive note, the National Institute for Neurological Disorders and Stroke (NINDS) counsel that reviews initial grant proposals found the EPGP to be a very high priority research project. One of the major focuses of EPGP will be to understand the genetics of generalized epilepsies. Ten epilepsy genes have been identified in specific families with many affected individuals. Almost all of these genes directly or indirectly affect the voltage and chemical-gated ion channels. However, the vast majority of individuals with generalized epilepsy have few or no first-degree relatives with epilepsy. According to most scientists and clinicians, available evidence illustrates that most patients with generalized epilepsy have abnormal genes that affect ion channels. We need to find these genes to uncover the mechanisms that underlie epilepsy. These genes can only be identified by studying a large sample of patients and carefully collected data. Another important focus of this study will be to study why some patients do not respond to antiepileptic drugs. What are the mechanisms by which drugs fail to reach the brain or, once they reach brain cells, why do they fail to reduce the excitability of nerve cells? Brain malfunctions may be so mild that they cannot be identified using available MRI techniques. Because brain malfunctions are common causes of partial epilepsy, a final target of EPGP is to understand the genetics behind how brain malformations are created and how they cause intractable epilepsy. One more exciting development is the potential addition to our staff of a researcher focusing on protein expression fingerprinting. This technology can identify the expression of millions of proteins in a drop of blood and study how different patterns correlate with clinical or other findings. This technique has already found success in predicting which cancer patients, based on a protein pattern, will respond to specific chemotherapy. By applying this technique to epilepsy, we hope we can help identify protein patterns that can predict a patient’s response to therapy, their prognosis, and other very important clinical issues. EPGP strives to identify the mechanisms that underlie epilepsy and why some therapies work for some patients bu not others. On a very positive note, the National Institute for Neurological Disorders and Stroke (NINDS) counsel that reviews initial grant proposals found the EPGP to be a very high priority research project. 5 HOW DOES EPILEPSY PROGRESS OVER TIME? By Orrin Devinsky, MD and Catherine Schevon, MD The definition of epilepsy encompasses a wide of cortical atrophy (the cortex becomes smaller), range of seizure disorders that are usually classified which shows that neuronal loss has caused injury to in terms of seizure type and EEG findings. Seizures the brain. may be partial onset or primary generalized dependWhile the precise causes of epilepsy progression ing on whether they arise from a specific brain region remain mysterious, a hypothesis called “temporal or appear everywhere simultaneously. There may be binding” indicates that in order for the brain to peran underlying genetic syndrome causing the seizures, form important functions like memory and learning, or they may be the result of a brain injury during groups of neurons create temporary networks in the adulthood. Specific disorders may be associated brain. It is possible that an initial injury that causes with different seizure types, such as complex partial seizures may create a variation of temporal binding seizures in temporal lobe epilepsy. Thus, there are where a network of neurons reorganizes and becomes many reasons for someone to have epilepsy, and con- epileptogenic. Repeated seizures, then, cause even sequently a variety of mechanisms by which seizures further remodeling of this network, making it easier develop. for seizures to emerge. Another way to think of seizure disorders is how The experimental model imitating this process in they evolve over time. With few exthe laboratory is known as “kindling.” ceptions, it is difficult to predict how Ultimately, it is our Classic examples of kindling in the a patient with a given epilepsy synclinical setting are temporal lobe hope that these drome will fare years down the line. epilepsy arising in young adulthood In some cases, such as benign rolandic discoveries will help after febrile seizures in infancy, and epilepsy of childhood, the seizures go brain injury followed by us to learn how traumatic away in ~99% of patients and treatthe delayed onset of partial seizures. ment after age 13-16 years is not to slow or prevent Laboratory experiments using this necessary. In other cases, the epilepsy the progression of kindling model have provided several may persist throughout life but the key pieces of evidence that the potenseizures are easy to control on medicaepilepsy. tial for a given neuronal network to tion. At the other end of the spectrum produce seizures depends strongly on are the patients (~30% of adults) whose seizures are the prior history of epileptic activity in the network. uncontrollable. Many of these people find that their Research into the mechanisms of epilepsy proseizures get worse as time goes on, and that they exgression involve deepening our understanding of the perience an accompanying cognitive decline. reasons why seizures develop, how a given seizure is The phenomenon of epilepsy progression was produced, and how they feed into the cycle of “seifamously noted by the 19th century British neurol- zures beget seizures.” Along the way, we will need to ogist, Sir William Gowers, who coined the phrase discover the mechanisms by which seizures emerge “seizures beget seizures.” To which we might add from a remodeled network, and why and how neurothe corresponding phrases, “seizures beget cognitive nal networks are vulnerable to epileptogenic remoddecline” and “seizures beget intractability.” Many of eling. This will require a “big picture” view of the our patients with difficult-to-control seizures say that brain at the levels of cellular function and network the more seizures they have, the more problems they organization. Ultimately, it is our hope that these dishave with memory. They also say that as they have coveries will help us to learn how to slow or prevent more seizures, they become more frequent and harder the progression of epilepsy. It is important to emphato control. The correlation of these effects with the size that progression does not affect all people with duration of epilepsy and the total number of seizures epilepsy. Indeed, defining which patients are at risk is well documented. Other effects include progreswill help us to understand the mechanisms and learn sive changes on MRI scans, such as the development how to treat them. 6 RESEARCH What is Magnetoencepalography (MEG)? MEG is a noninvasive recording and analysis of the magnetic fields that originate from the human brain. MEG provides functional information of the brain, which allows neurologists to observe the brain while it is in movement, unlike other recording methods that permit doctors to examine a still photo of the brain. MEG of Language in Epilepsy NYU is investigating the role of MEG in language organization in patients with epilepsy, and whether MEG can locate the area of the brain that controls language. Another aim for MEG is to study the patterns of language organization in patients with epilepsy. This information may be useful in planning surgery and in language rehabilitation. The New York MEG Center is open! Call 212.871.1821 for more information… Neurofeedback Update Neurofeedback is a form of biofeedback that may help control seizure disorders. The technique is a non-invasive, non-medical, non-surgical approach, during which the patient tries to control and train his/her brain activities. Neurofeedback may be an alternative option for medically refractory and/or surgically refractory epilepsy patients. So far, we have completed the study on a few patients and are currently generating data. We need to recruit more individuals before we can make any conclusions about neurofeedback and the effect it has on patients with epilepsy. To learn more about this study and whether you are a candidate, please contact Sathya Subbanna, M.D, Research Scientist at 212.263.2167 or email him at Sathyashankar_t_s@rediffmail.com. Marketing Task Force Educates the Public About Epilepsy -Strives to Reduce Stigma Towards the Disorder continued from page 1 in conjunction with UCB Pharma. The free, full-page ad will be published in Family Circle Magazine in December thanks to Lisa Orban, a faces Task Force member whose nephew is affected by epilepsy. Richard Shane of Treasure Chest and Phil Taggert of State of the Art donated their time and talents to produce, print and mail a PSA to 500,000 ski and vacation aficionados just in time for November, National Epilepsy Month. The PSA will soon be on display at the NYU Comprehensive Epilepsy Center and at the new faces office. Tennis star Chris Evert also contributed her time to educating the public. With her personal connection to one of the Task Force members, she recorded a radio PSA about epilepsy and how people with epilepsy can live normal lives. The sixty-second spot will air on ESPN Sports Radio thanks to supporter Tim McCarthy, and on Infinity radio stations with help from Lisa Orban. These PSAs are all downloadable from the faces website at www.beatingepilepsy.org. If you know someone in marketing or in the media who can help educate others and reduce the stigma towards epilepsy, please let us know. Every website, magazine, newspaper, newsletter, and radio spot that shows these PSAs helps educate the public about epilepsy! 7 Art Day 2004 On Sunday, October 24th, faces and the NYU Epilepsy Center hosted our 6th annual Art Day at the Children’s Museum of the Arts in SoHo. There were five art workshops including colorful puppets, wish boxes, watercolor crayon art and vibrant windowstain glass creations. Sammie and Tudie, from Imagination Playhouse, captivated the crowd with their amazing face painting and balloon artistry. A special thanks to all of our volunteer artists who donated their time and talents to the event, to the Chris McCarthy Scholarship Fund for underwriting the costs of the event, and to Stacey and Neil Weiss’ friends at Monroe Bagel and Deli Catering for donating the delicious food. Pictured above: Sammy at work Pictured left: The Eskin Family BBQ and Pool Party In August, the Adamkiewicz Family generously opened their home to friends of faces. Families enjoyed swimming, sampling hamburgers, chicken, fruit salad, and a special faces cake. The day was accentuated with a variety of snow-cone flavors and a piñata filled with toys and treats. Special thanks to Laurie and Chuck Adamkiewicz of SeaBreeze Graphics for hosting this event. Njeri & her mom Celebrating at the BBQ 8 Game Day at Although Broadway City closed earlier this year, we wanted to continue our annual faces “Game Day,” so we changed venues to RexPlex in Elizabeth, NJ. On September 19th, families played video games in the arcade, shot hoops on the basketball court, tested their driving skills in the bumper cars, rode the carousel, and found their way through an obstacle course. Our friends at Imagination Playhouse helped us celebrate Game Day at this new venue, as did Shane and Mark from Acroback, Inc., who were an instant sensation with their atmospheric expertise! Fun for all ages on Game Day The Lee Family enjoying Game Day at RexPlex Christmas Spectacular Many thanks to Z100 for their donation of twenty tickets to the Christmas Spectacular at Radio City Music Hall featuring the world famous Rockettes! It was a wonderful way to kick off the holiday season! Thanks to the Eskin Family for informing us of this great opportunity. 9 TALKING TO YOUR CHILD ABOUT EPILEPSY -Anonymous consciousness. I Our daughter, Maddie, has had about fifteen seia zures over the past year and a half. Although she is c a n ’ t i m a g i n e more frightening only five years old, she is surprisingly aware about experience than her condition. At first, we found it difficult to talk watching that happen to Maddie about epilepsy, but over time, we have to your own body and realized that there are advantages to simple, open being helpless to stop and honest communication with her. it. As Maddie grows up, she will notice more and An even more terrifying experience would be more how our family handles her epilepsy. The way watching something like that happen without havMaddie thinks that we see her will affect the way ing any understanding of what it was or why it was she begins to see herself. If we don’t talk to her happening to you. about what is going on with her health, her body, and the seizures, she may draw her own concluEventually, Maddie began asking questions and sions. We don’t want her to think that the seizures talking more about the seizures. Something that occur because she has been a bad child worked well for us was role-playing with or because she is unloved. Children are We don’t want her dolls and stuffed animals. Her bear sensitive to their surroundings: you never her to think would have a seizure and she would tell know what conclusions they will draw if how the bear felt or what we should that the sei- us they don’t understand what is happening do for the bear during the seizure. We’ve to them and why it is happening. zures occur heard of other parents who read books to Maddie was three and a half when her because she their child like “Dotty the Dalmation Has We are also thinking about seizures began. Initially, she did not say has been a Epilepsy.” taking Maddie to a trained counselor or much about the seizures and didn’t really bad child or pediatric therapist so that she has somewant to talk about them. We knew that she was aware of the endless trips to the because she is one else to talk to. There might be things she doesn’t feel comfortable asking us hospital for blood work, consultations, unloved. that a therapist could help with. EEG’s, MRI’s, CT scans; the list goes on. At first we weren’t sure how to start a diaTalking to Maddie also helped us cope with her logue about all these tests and what they were for. epilepsy and how it was impacting our lives. AlWe decided that helping Maddie understand and though many parents don’t like to talk about it, adjust to these changes in her life far outweighed when you have a child with special needs, you any verbal missteps we might make. We think that struggle with a wide range of emotions. At times opening the doors to communication with Maddie we felt afraid, angry, resentful, and burdened. Then helped her get through some hard times. It also we would feel guilty about having those emotions gave us the opportunity to learn more about Maddie in the first place. Talking about Maddie’s medical so that we could better help her. condition helped us work through our own issues and concerns. As Maddie underwent more tests and hospital visits, we tried to explain in simple terms what Maddie’s epilepsy continues to change our lives the tests were for and what they showed. We truly in profound ways. Bottling up the impact of these believe that the more she understood what was changes would be unhealthy for our entire family. happening, the more empowered she felt. During We hope that keeping Maddie informed about her a recent seizure, Maddie watched her arms and condition will help her continue to be the brave girl legs jerk for about ten minutes before she lost that she has been so far. 10 July 2004 - October 2004 A special thanks to the following supporters: $25,000+ $1,000+ $200+ Champion Motor Group & Bentley Long Island The Brunswick School Deutsche Bank Horace Greeley High School, In honor of the Class of 2007 Patrick & Kristine Blake $10,000+ Anonymous In honor of Christine’s marathon Robert Mark Selby, In honor of Jane & Richard Gilbert Steiner Sports Memorabilia, Inc. Calvert Foundation PrideCare, Inc. $500+ Tuberous Sclerosis Alliance $2,000+ Chris McCarthy Scholarship Foundation Parents Against Childhood Epilepsy (PACE) Kate Cooney Picco, In honor of Christine’s marathon The Anita Kaufmann Foundation, In honor of Christine’s marathon Bahar-USA Developments, LLC McGraw-Hill Companies Sharon Perhac, Beth Cohen & Friends, In honor of Christine’s In honor of Melissa Friedman marathon Thomas & Kimber Gibson David & Jill Robbins GlaxoSmithKline Scott & Liane Stultz Neil Kuslansky, Karen Wanger In honor of Jennifer Prevete Seth & Amy Markowitz Thank you to the following faces supporters, who also made a donation to faces in honor of Christine Toes’ first marathon: Randi Levine, ID Luckower, Al Martinez, and Sylvia Rothbein. Please keep faces in mind when making your end of the year contributions! Call 212.779.2041 for more information. Some corporations will match your donation! Check with your company to see if your contribution to faces can be matched! Although every donation to faces is important, we regret that in order to keep our newsletter costs to a minimum, we can only acknowledge donation of $200 or more. 11 Upcoming faces Events NYU Comprehensive Epilepsy Center Stay tuned to www.nyufaces.org for information on our upcoming events! 403 East 34th Street, 4th Floor 212.263.8870 (phone) 212.263.8341 (fax) Mets Game and Picnic Yankee Game Knicks Game School of Visual Arts SAVE THE DATE Monday, April 4, 2005 faces at Pier 60 How are we doing?! If there are events, programs, newsletter articles, or conference topics you would like faces to work on in 2005, please let us know by emailing facescoordinator@yahoo.com or calling 212.779.2041. More Awareness Activities Visit a participating New Jersey Kings supermarket for an epilepsy awareness contest in their store circular, a poster about epilepsy, and free epilepsy bookmarks. Find out how you can win a four day spa vacation to Canyon Ranch! For more information, go to www.TheAnitaKaufmannFoundation.org. Orrin Devinsky, M.D. 212.263.8871 Kenneth Alper, M.D. 212.263.8854 William Barr, Ph.D. 212.263.8317 Barbara Clayton, RN 212.263.8871 Werner Doyle, M.D. 212.263.8873 John Figueroa, CSW 212.263.8871 Peggy Guinnessey, CTRS 212.263.8782 Maria Hopkins, RN 212.263.8359 Ruben Kuzniecky, M.D. 212.263.8870 Josianne LaJoie, M.D. 212.263.8318 Daniel Luciano, M.D. 212.263.8853 Nandor Ludvig, M.D., Ph.D. 212.263.2168 Roseanne Mercandetti, RN (Manager CEC) 212.263.8321 Erica Metzger-Hare, MBA 212.263.8358 Mary Miceli, RN 212.263.8359 Daniel Miles, M.D. 212.263.8318 Chris Morrisson, Ph.D. 212.263.8317 Siddartha Nadkarni, M.D. 212.263.8870 Souhel Najjar, M.D. 212.263.8872 Steven Pacia, M.D. 212.263.8875 Kim Parker, RN 212.263.8871 Catherine Schevon, M.D., Ph.D. 212.263.8870 Melanie Shulman, M.D. 212.263.8856 Alyson Silverberg, RNNP 212.263.8873 Anuradha Singh, M.D. 212.263.8311 Sathyashankar Subbanna, M.D. 212.263.8870 Ravi Tikoo, M.D. 212.263.8318 Pat Traut, RN 212.263.8871 Blanca Vazquez, M.D. 212.263.8876 Howard Weiner, M.D. 212.263.6419 Charles Zaroff, Ph.D. 212.263.8317 Christine Toes 11 East 32nd Street, Basement Office • New York, NY 10016 212.779.2080 or 2041 Melissa Murphy facescoordinator@yahoo.com nyufaces@yahoo.com