AMERICAN EPILEPSY SOCIETY

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Volume 22, No. 1 | Winter 2013

2012 Annual Meeting Recap authors had an audience. The Exhibit Hall showcased 83 commercial and non-profit exhibitors and hosted lunch and snack breaks each of the three days. One feature of the Exhibit Hall was the Epilepsy Resource Center where many of the non-profit and patient advocacy organizations presented on their programs. The Exhibit Hall also featured Innovation Pavilions which companies used to showcase new technology, patient art and chalk drawings. This was in addition to the Scientific Exhibits which were elsewhere in the Convention Center featuring the up and coming research of commercial entities.

Sunny San Diego welcomed us for the 2012 AES Annual Meeting. Despite the worldwide economy, attendance was similar to last year and session rooms were full. Attendance was over 4,500 people representing 66 different countries including: Chile, Cyprus, Dominican Republic, Egypt, Honduras, Ireland, Nigeria, Peru, Serbia, Thailand, United Arab Emirates, and Vietnam. Fifty-eight percent of attendees were AES members and sixty-four percent from the U.S. A significant number of attendees are nonmembers and from other countries. MDs still make up the largest percentage of attendees, at 53 percent. Other specialty groups such as basic science researchers, nurses, nurse practitioners, physician assistants, pharmacologists, psychologists, psychiatrists, veterinarians and others make up the rest of the group. A total of 611 were registered as residents, students or fellows this year. Attendees were kept busy with 15 lectures and symposia, 15 Investigator and Clinical Investigator Workshops, 37 Special Interest Groups, six Skills Workshops, 27 Platform Sessions and 1,169 Posters. The most popular symposia were the Presidential Symposium with over 1,400 registered and the Merritt Putnam Symposium with just under 1,400 registered. The guided poster tours continued to be very popular. Large crowds followed the tour leaders over the three Poster Sessions. The lunch break on all three days was dedicated to poster presentations, with no other programming or activities allowed. This ensured that poster

During the meeting, the Society honored several members for their research and service. The Epilepsy Research Recognition Awards are considered the most prestigious prizes for research in epilepsy. The AES gives two of these awards annually to active scientists and clinicians working in all aspects of epilepsy research. The awards are designed to recognize professional excellence reflected in a distinguished history of research or important promise for the improved understanding, diagnosis and treatment of epilepsy. Richard Miles, Ph.D., director of the group Cortex and Epilepsy of the Institute for the Brain and Spinal Cord, Centre Hospitalier Univeristaire Pité-Salpêtrière, Paris, received the 2012 Basic Science Investigator Award on December 1, 2012 during the annual Presidential Symposium. Renzo Guerrini, M.D., Director and Professor of Pediatric Neurology and Psychology, Department of

Important Dates March 1

Abstract Submission Site Opens

May

Hotel Reservations Open

June 13

Abstract Submission Site Closes

July

Brochure Published and Registration Opens

August 26

Poster Acceptance Notices Sent

Mid-October

Early Registration Discount Expires

Early November

Deadline for Individual Hotel Reservations

Mid-November

Pre-Registration Deadline

December 5

Registration Opens On-Site in Washington, D.C.

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Inside This Issue FEATURES

2012 Annual Meeting Recap ........................................1 Important Dates ................................................................1 2013 Board of Directors ..............................................3 Seed Grant Program ......................................................6 Members In the News ....................................................7 2012 Annual Meeting ....................................................8 Building for the Future ................................................12

COLUMNS

From the President ..........................................................2 NINDS Update ....................................................................4 Epilepsy Foundation Update ..........................................5 SIGnals ................................................................................10 Calendar of Events ........................................................12

AESNEWS

AES News is published three times a year by the American Epilepsy Society, American Branch, International League Against Epilepsy.

FROM THE PRESIDENT I am honored to have the opportunity to serve the Society as its president and am looking forward to an amazing year. I can’t thank Dr. Frances Jensen enough for accomplishing so much during her term. In particular, for the amazing accomplishment of achieving the creation and release of first IOM report on epilepsy.

Editor Deepak K. Lachhwani, M.B.B.S., M.D. Executive Director M. Suzanne C. Berry, M.B.A., CAE [email protected] Assistant Executive Director Cheryl-Ann Tubby, IOM, CPP [email protected] Membership Services Kathy Hucks [email protected] Kate Flaherty [email protected] Director of Education Jeffrey D. Melin, M.Ed., CMP [email protected] Assistant Director of Education Sandy Pizzoferrato [email protected] Education Group JoLynn Amsden [email protected] Cindy Johansson [email protected] Paul Levisohn, M.D. [email protected] Annual Meeting Group Elizabeth W. Kunsey, CMP [email protected] Elizabeth Pillsworth, CMP [email protected] American Epilepsy Society 342 North Main Street West Hartford, CT USA 06117-2507 Phone: 860.586.7505 Fax: 860.586.7550 Website: www.AESNET.org Editorial Deadlines Spring/Summer 2013 – May 6, 2013 Fall 2013 – August 19, 2013 Winter 2014 – January 13, 2014 Membership consists of clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in seizure disorders. Members represent both pediatric and adult aspects of epilepsy.

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My priorities for the coming year include ensuring that AES invests in future talent. This year we will increase our efforts to bring the best and brightest researchers and clinicians into epilepsy, help them get established and get them invested in our organization. Last year we developed the Task Force for Universal Fellowship Training and launched the TUFT / AES Fellows program. At the 2012 Annual Meeting we hosted 87 fellows who were matched (in small groups) with mentors for the Annual Meeting. I’d like to thank those mentors for volunteering their time during a very busy meeting. In addition, ten fellows who have started towards careers in clinical research were selected to take part in a brand new, year round on-line training effort called EpiPORT or Epilepsy Patient Oriented Research Training. I hope to expand both programs this year to increase the number of participants and include more disciplines. I believe that integration into the world at large is important for AES so I will be encouraging collaboration with the international community whenever possible. Last Fall we co-sponsored a very successful translational workshop at the European Congress on Epilepsy in London. This is a perfect model for pooling resources and reducing overlapping efforts. Having served on the North American Commission, I believe we can broaden that relationship to facilitate these efforts. Web, social media and technology are moving fast and we need to stay relevant. The Annual Meeting app was successfully launched at the San Diego meeting and worked very well. I’d like to see AES take the lead in providing easy to access content for our members and the epilepsy community. A new project, entitled Q-PULSE (Quantitative Practical Use-driven Learning Survey in Epilepsy) was launched late last year to survey current practice trends. The Q-PULSE Task Force is developing the first survey and inviting the first expert panel to participate. I look forward to reporting results of these efforts later this year. We should be launching several new online educational tools early this year that I hope you find useful. Educational initiatives around the newly added qualification requirement are already in the works. This is a wonderful opportunity to engage lots of people in the Society. The Council on Education and staff have done a fabulous job so far. We need to continue to move forward quickly and think about how we can serve other disciplines. I would like to thank all the amazing volunteers who give their time and energy to making the Society great, as well as our amazing staff. At present we have approximately 700 AES members involved in 60 committees and task forces. The AES is striving to be inclusive, and provide opportunities for all members who would like to be active in the organization. We encourage all members who would like to be placed on committees to update your profile and submit your CV and interests on the Professional Connection part of the AES website (http://connect.aesnet.org/Home/). It is very helpful if you specify what committee or task force you are most interested in, and highlight why / how you feel you could contribute. My Presidential Symposium at the 2013 Annual Meeting will be on Epidemiology of Epilepsy Surgery. There has been a significant shift in the type of patients who are being referred for epilepsy surgery, and who are undergoing resection around the country, and indeed around the world. The shift consists of a reduction in mesial temporal sclerosis and temporal lobe epilepsy, and an increase in neocortical epilepsy cases. Many theories exist on why this may be occurring, including a change in referral patterns, the development of more epilepsy centers, or a shift in underlying etiologic factors. I hope to explore the evidence for the shift, the data supporting some of these theories, and a discussion of how this might impact clinical practice and research. I want to encourage all AES members, if you have any concerns about the Society or ideas on how to improve things, to contact me and let me know. I am looking forward to a great year!

©2013 American Epilepsy Society. All rights reserved.

Jacqueline A. French, M.D.

The American Epilepsy Society promotes research and education for professionals dedicated to the prevention, treatment and cure of epilepsy. 2

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2013 Board of Directors

The American Epilepsy Society installed the 2013 Board of Directors at the 2012 Annual Meeting in San Diego, CA. Pictured here are the combined 2012 and 2013 Board, Ex-Officio members and staff. PRESIDENT Jacqueline A. French, M.D. New York, NY FIRST VICE PRESIDENT Elson So, M.D. Rochester, MN

EX-OFFICIO Gregory K. Bergey, M.D. Epilepsy Currents Baltimore, MD

SECOND VICE PRESIDENT Amy Brooks-Kayal, M.D. Aurora, CO

Douglas A. Coulter, Ph.D., Research & Training Council Philadelphia, PA

TREASURER Michael D. Privitera, M.D. Cincinnati, OH

Philip Gattone, CEO Epilepsy Foundation Landover, MD

ASST. TREASURER William D. Gaillard, M.D. Washington, D.C.

Brandy Fureman, Ph.D. NINDS / NIH Bethesda, MD

PAST PRESIDENT Frances E. Jensen, M.D. Boston, MA

Robert Edward Hogan, M.D. Council on Education St. Louis, MO

BOARD MEMBERS Janice M. Buelow, RN, Ph.D. Indianapolis, IN

Cesare T. Lombroso, M.D., Ph.D. Boston, MA

David M. Labiner, M.D. Tucson, AZ Page Pennell, M.D. Boston, MA Helen Scharfman, Ph.D. Orangeburg, NY Shlomo Shinnar, M.D., Ph.D. Bronx, NY

William H. Theodore, M.D. Communications Council Bethesda, MD

Karen S. Wilcox, Ph.D. Salt Lake City, UT

James Wheless, M.D. Council on Clinical Activities Memphis, TN STAFF M. Suzanne C. Berry, M.B.A., CAE Cheryl-Ann Tubby, IOM, CPP Jeffrey D. Melin, M.Ed., CMP Margaret Jacobs

Joseph Sirven, M.D. Epilepsy Foundation PAB Phoenix, AZ Dennis Spencer, M.D., Development Council New Haven, CT Sheryl Haut, M.D. North American Commission Liaison Bronx, NY

AES Past Presidents

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NINDS UPDATE January 2013 NINDS Update By Brandy Fureman, Ph.D.

The National Institute of Neurological Disorders and Stroke (NINDS) will host the upcoming conference, “Curing the Epilepsies 2013: Pathways Forward,” on the NIH campus in Bethesda from April 17-19, 2013. Registration is now open for this conference, which will include scientific sessions on major topics in epilepsy research and will culminate in a discussion of updates to the Epilepsy Research Benchmarks. The Benchmarks are meant to engage the entire epilepsy community, and NINDS in particular considers the Benchmarks when planning new investments in epilepsy research. To inform discussion at the conference, NINDS has issued a Request for Information (RFI) for broad input on advances in epilepsy research, challenges and opportunities in the field, and roles the Benchmarks have played or could play in stimulating progress.

RFI. More details about the conference, including agenda and registration are available at https://meetings.ninds.nih.gov/?ID=4069. Responses to the RFI must be submitted online at www.ninds.nih.gov/2013epilepsiesRFI and should be received by February 15. The conference will also include a Poster Session. Individuals eligible to submit an abstract include those who meet or are just beyond eligibility as an NIH-defined Early Stage Investigator, graduate students and postdoctoral and clinical fellows. Abstracts will be accepted until February 1, and fifty (50) individuals will be selected to receive travel awards and to present posters at the conference (45 individuals working in the USA and five from foreign institutions). These travel awards will be sponsored by NINDS, the International League Against Epilepsy (ILAE), and the Tuberous Sclerosis Alliance. Individuals who would like to submit an abstract can do so when they register on the conference website above. For any additional questions about abstract submission, please contact Dr. Miriam Leenders at [email protected].

The NINDS encourages you to participate in the Curing the Epilepsies conference and to contribute your ideas to the

Save the Date! Curing Epilepsy Conference: Pathways Forward April 17 – 19, 2013 Natcher Auditorium • National Institutes of Health Bethesda, MD Co-Chairs Drs. Anne Berg, Sam Berkovic and Kevin Staley ask you to save the date and plan to attend the third Curing Epilepsy Conference. The conference will focus on advances in understanding both the basic mechanisms of the epilepsies and the scientific opportunities for identifying effective treatments and “cures” for specific types of epilepsy. Sessions will include a Poster Session for early stage investigators, plenary sessions, and breakout discussions. Registration deadline March 24, 2013 https://meetings.ninds.nih.gov/?ID=4069 .

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EPILEPSY FOUNDATION UPDATE Despite recent advances in treating epilepsy, the condition continues to evoke negative stereotypes, fear and discrimination. To help people with epilepsy fight discrimination, the Epilepsy Foundation created the Jeanne A. Carpenter Epilepsy Legal Defense Fund (LDF). The goal of the LDF is to advocate for all people with epilepsy nationwide facing discrimination in employment, education, public services and other areas. The LDF makes case referrals to a nationwide network of cooperating attorneys, and provides these attorneys extensive case assistance. Our case referrals involve such issues as employment discrimination, police misconduct, special education, and benefits entitlement. Please consider sharing this information within your offices. This is a resource that you and your staff can provide to people with epilepsy or caregivers who may have been treated unjustly in the workplace, school, or other areas of life because of epilepsy. For more information or to request assistance, see the Fund’s website, at www.epilepsylegal.org or contact us at [email protected] or 800.332.1000.

National Walk for Epilepsy

The National Walk for Epilepsy is on Saturday, April 20, 2013 on the Washington Monument Grounds in Washington, D.C. You can register as an individual or join a team, participate actively or virtually, or just sponsor a friend, patient or coworker. Joining an AES team means that the money raised comes back to the AES to invest in research. To join a team go to the walk website (http://giving.epilepsyfoundation.org/site/TR/Walk/walk?fr_id=1960&pg=entry), select Register Now, and then find the AES Team link.

That link will take you to a list of teams that you can either join or sponsor. Or go directly to the AES Team (http://giving.epilepsyfoundation.org/site/TR/Walk/walk?fr_id=1960&pg=team&team_id=25070). All AES teams compete for a prize for the most money raised. Last year eight teams directed their donations to AES’s research funds. This year AES brought the second biggest group of walkers, and its teams together raised the most money. A total of $41,171 came back to AES to fund research and training. You can help us beat that amount this year by walking or sponsoring a walker. Instructions are on the website for registering to walk or to sponsor someone.

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Seed Grant Program

The Research & Training Council is happy to announce a new funding mechanism designed to foster collaborative interactions between two or more established epilepsy research investigators through small seed grants.* According to Council Chair, Douglas A. Coulter, Ph.D., “These are designed to enable information exchange / technology transfer, travel of postdoctoral fellows between laboratories, and for small supply budgets. In the funding environment that exists today, this kind of grant mechanism may serve to better leverage existing resources to allow more technically encompassing, multifaceted, multi-investigator proposals to come together, and be more competitive in the frenzied landscape which currently exists at the NIH Study Section level. This funding mechanism has been implemented as a nimble process with a short application and a quick turnaround, which can rapidly provide modest funding for early, fledgling collaborative efforts precisely at the time when this is most needed.”

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Although not required, trans-disciplinary projects, projects integrating clinical and basic research, and research directions with translational relevance are encouraged.

*An established investigator is defined as having at least an Associate Professor or equivalent level appointment, and who has a history of successful NIH / NSF / VA funding. Their work can be focused on basic, translational, or clinical research. Funding: A maximum of five one-year grants in the amount of $20,000 each will be awarded annually. Grants are non-renewable.

Deadlines

There are three rounds of consideration each year. Applications will be reviewed by a committee of the Research & Training Council and results will be announced within six weeks of the application deadline.

Criteria:

Submission deadlines (no extensions):

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At least one PI must be an active member of the Society

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March 29, 2013

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Must be a new initiative that will add value to the field or fill a gap in knowledge

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June 29, 2013

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September 30, 2013

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Techniques in a collaborative effort must be complementary

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Must involve two or more established investigators, at least one of which is an epilepsy-focused investigator

Details can be found on http://www.aesnet.org/research/aes-sponsored-grant/seedgrant-program/.

A scene from the 2012 Annual Meeting Poster Session

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MEMBERS IN THE NEWS Clinical Trials to Examine Generic Drugs for Epilepsy University of Cincinnati (UC) clinicianresearchers have received $2.6 million to study generic antiepileptic drugs as part of an effort to provide the U.S. Food and Drug Administration (FDA) with data that could lead to new regulations related to approval of new generic drugs. The funding, from the FDA, the American Epilepsy Society and the Epilepsy Foundation, will be divided between studies of generic equivalence for the drug lamotrigine in two different populations. The studies will be phase-4 clinical trials, which are intended to gather information on an approved treatment’s risks, benefits and optimal uses. Michael Privitera, M.D., a professor in the UC Department of Neurology and Rehabilitation Medicine and a UC Health neurologist, is the principal investigator at the Cincinnati site. Privitera is director of the Epilepsy Center at the UC Neuroscience Institute, one of four institutes of UC Health and the University of Cincinnati. Michel Berg, M.D., is principal investigator at the University of Rochester in Rochester, NY. Four other academic medical centers are also enrolling patients. Researchers expect to begin enrolling participants early in 2013. One study will examine generic copies of lamotrigine from two different manufacturers, one from the “high” range and the other from the “low” range. This “chronic dose” study will test how the generics perform when administered daily over a several-week period, with the patients divided into two groups and switching copies twice over four test periods for a sequence-randomized study. (Patients will also continue their usual medications, including antiepilepsy drugs.) At the end of each two-week test period, the participants will undergo extensive blood level monitoring. The other study will compare the two generic copies with Lamictal, the brand-name version of lamotrigine. Participants take each medicine twice during the study period. This is a “single dose” study, in which patients take a single dose of generic lamotrigine in addition to their regular antiepileptic drugs and then have rigorous blood level testing over a 96-hour period. The estimated completion date for both studies is June 2014. To read the rest of the University of Cincinatti news release or find out how to refer patients to the study, go to http://www.healthnews.uc.edu/news/?/21761/.

New Member of the Order of Canada Warren T. Blume, M.D., FRCP(C), Professor of Neurology Emeritus at the University of Western Ontario in London, was recently elected as a Member of the Order of Canada for his long and distinguished service to Canadian citizens who suffer from epilepsy. The Order of Canada was established in 1967, Canada’s centennial year by Queen Elizabeth II. It is the centerpiece of Canada’s honors system and is one of the country’s highest civilian awards. Election as a Member recognizes a lifetime of outstanding achievement, dedication to the community and service to the nation. The Order recognizes people in all sectors of Canadian society who have enriched the lives of many and made a difference. The Order of Canada’s motto is “Desiderantes Meliorem Patriam” (They desire a better country). In 1977 Dr. Blume, helped establish the first epilepsy program in Ontario and the second in Canada. He is known around the world for his atlases in electroencephalography, which have contributed greatly to the training of several generations of electroencephalographers and epileptologists as well as for his numerous publications that have provided new insights into the clinical pathophysiology of epilepsy. He was one of the founding members of the Canadian League Against Epilepsy and was a leader in creating the EEG certification examination in Canada. Dr. Blume received the J. Kiffin Penry Award for Excellence in Epilepsy Care at the 2012 AES Annual Meeting. 2013 Dreifuss-Penry Award The American Academy of Neurology (AAN) recently announced W. Curt Lafrance, Jr., M.D., M.P.H., FAAN as the 2013 recipient of the Dreifuss-Penry Award. This award recognizes physicians in the early stages of their careers who have made an independent contribution to epilepsy research. The award is named for two epileptologists who made outstanding contributions to the field of epilepsy. The award will be presented during the AAN’s Annual Meeting in San Diego on Thursday, March 21 at 12:00 pm during the S48: Epilepsy: Therapy session.

2012 Class of Junior Epileptologists from Mexico and their mentors.

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2012 ANNUAL MEETING

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2012 Annual Meeting Recap Continued from page 1 Neuroscience, University of Florence, Anna Meyer Children’s Hospital, Florence, Italy, received the 2012 Clinical Investigator Award. Drs. Guerrini and Miles also had the honor of presenting Keynote Addresses about their research during the Annual Meeting.

as possible are considered in the planning of coming years. As of January 10, 325 meeting attendees have completed the online evaluation.

David C. Taylor, M.D., Hon. F.R.C.P.C.H, retired Foundation Chair in Child and Adolescent Psychiatry, and lately Head of the Department of Psychiatry and Behavioural Science, at the University of Manchester, UK, proudly accepted the Society’s most prestigious professional award from President Frances Jensen, Lennox and Lombroso Fund Trustee Tallie Z. Baram and Research Recognition Award Committee Chair, John Huguenard. The William G. Lennox Award is funded through the Lennox and Lombroso Trust Research & Training and was established to recognize members of the Society, usually at a senior level, who have a record of lifetime contributions and accomplishments related to epilepsy. The 2012 J. Kiffin Penry Excellence in Epilepsy Care Award was also presented during the Annual Meeting. Warren T. Blume, M.D., FRCP(C), Neurology Professor Emeritus of the University of Western Ontario, received this recognition on December 1. Presented by President, Frances Jensen, Mrs. Sarah Penry and Award Subcommittee Chair, Gregory Cascino, the award recognizes Dr. Blume’s lifelong focus on and genuine concern for the patient with epilepsy as well as having a major impact on patient care and improving the lives of persons with epilepsy. Dr. Bruce P. Hermann, Ph.D. received the AES Service Award on November 30 from President Frances Jensen. This award recognizes an AES member who provides outstanding service in the field of epilepsy and exemplary contributions to the welfare of the AES and its members. Nominations for these awards are solicited by the Research Recognition Award Committee during the summer. Nomination packages are reviewed early in the Fall and the awardees are selected based on a list of criteria. The process for nominating can be found on the website at http://www.aesnet.org/go/research/research-awards. The Education Council, the Annual Meeting Committee and staff are reviewing your feedback submitted through the online Evaluator system. Keeping in mind that there are some things that can’t be changed, your ratings and comments are reviewed and analyzed each year and as many

A sample of some of the feedback that the Committees need to analyze follows: • A greater diversity of speakers — junior and senior faculty • More clinical discussions • More complicated subjects for high-level epileptologists • Workshops that are really workshops • Build in more free time, meeting is too intense • Make it more affordable • More audience participation • Make it easier to find food • More controversy and debate format • Move to another time of year • Meeting needs to be longer • Open posters earlier • More pediatric sessions • Fewer evening sessions, need time for dinner. The vast majority completing the online form are clinicians, so a separate online evaluation was promoted for the nonCME activities. This included the Investigators’ Workshops and the SIGs. Their feedback included: • Too early, but refreshing • Very good new information gained • Found the information at this SIG extremely helpful and beneficial • Need more time for discussion • Liked the diversity and panel format, although more time could have been set aside for audience participation • Would advocate for more simultaneously scheduled SIGs, with perhaps different foci • Not enough workshops • Fantastic session — strong organization and execution!

2012 Basic Science Investigator Award — Richard Miles, Ph.D. 2012 J. Kiffin Penry Excellence in Epilepsy Care Award — Warren T. Blume, M.D., FRCP(C)

David C. Taylor, M.D. accepted the William G. Lennox Award

2012 Clinical Investigator Award — Renzo Guerrini, M.D.

AES Service Award — Bruce P. Hermann, Ph.D.

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SIGnals Shore LIJ, Dr. Georgia Montouris from Boston University, Dr. Alison Pack from Columbia University and Dr. Page Pennell from Brigham and Women’s Hospital (all AES members) facilitated the discussions, with active contributions from audience participants. Evolving from the case discussions, introductions to the Epilepsy Birth Control Registry and the MONEAD Study were provided by Dr. Andrew Herzog and Dr. Pennell, respectively.

SIGnals For more on what’s happening with your favorite SIG, log on to Professional Connections and join the discussion. You will find SIGs under the Directory Tab. Sleep Mark Quigg, M.D.

The 2013 Women’s Issues in Epilepsy SIG will be coordinated by Dr. Danielle Andrade from the University of Toronto and Dr. Mona Sazgar from UC Irvine. The topic for the 2013 SIG is still to be determined.

The topic for the 2012 meeting was to review current knowledge on the types and severity of interruptions of sleep in the patient with epilepsy. Three speakers covered basic and clinical research. Dr. Rama Maganti reviewed his recent work on the effects of specific genetic lesions of the biological clock on epileptic expression in a mouse model. His work demonstrated that genes with clock function demonstrated diminished amplitude and aberrant circadian oscillation. Dr. Carl Bazil reviewed aspects of anticonvulsant treatment on sleep architecture and related cognition / memory in the human with epilepsy, noting that seizure control probably trumped changes in sleep patterns with different anticonvulsants, but tailoring medications to help treat daytime sleepiness or insomnia remained important. Finally, Dr. Selim Benbadis reviewed the wide literature of effects of seizures and the epileptic lesion on sleep architecture in patients with epilepsy, concluding that medically-intractable epilepsy has the most consistent effects on sleep architecture, but clinical significance of these effects were not clear. The meeting closed with calls for ideas for topics for 2013.

Epidemiology Anne T. Berg, Ph.D. This year the Epidemiology SIG focused on terminology for describing and “classifying” focal seizures. We considered the varied terminology and communication needs from different perspectives including the epileptologist in a world-class monitoring unit (Tobias Loddenkemper and Samden Lhatoo), a physician working in a developing, underresourced setting (Ana-Claire Meyer), a randomized clinical trialist (Anthony Marson), and an epidemiologist involved in public health surveillance (David Thurman). Each discussed the needs for precision, communication, and relevance within his or her own areas of specialization and also highlighted how important it is to be able to communicate in a common language across the entire field of epilepsy. An elegant presentation by Jeffrey Buchhalter on ontologies, controlled vocabularies, and informatics introduced a way forward that has the possibility to accommodate specific terminological needs, differences, and preferences for diverse applications while allowing clear, unambiguous translation across these settings. The session started off in the EMU with videos of patients having seizures and the attendees being asked to vote whether the seizure was simple partial or complex partial. Most abstained. There was a lively discussion, and suggestions encouraging straight-forward descriptions of ictal events based on what is actually observed (not inferred or assumed), could greatly enhance communication for all purposes, and might in fact be easier for the nonspecialist, than trying to decide between “simple” and “complex,” terms which largely failed the attendees for describing the seizures in the videos.

Nursing Madona Plueger, M.S.N., RN, CNRN and Gigi Smith, M.S.N., APRN, CPNP The Nursing SIG provided a wonderful opportunity for the Managing Epilepsy Well Network to present two programs that had not been presented previously. Shelly Stoll, M.P.H., presented the FOCUS program (Figure out, Observe, Connect, Undertake, and Study) that she manages at the Center for Managing Chronic Disease at the University of Michigan. The FOCUS program combines group discussion and one on one interaction for adults with epilepsy and promotes self-regulation skills. The Program for Active Consumer Engagement in Self-Management (PACES) at the University of Washington, was presented by Erica Johnson, Ph.D., and Bob Fraser, Ph.D. PACES provides a group intervention facilitated by a PhD psychologist and co-leader with epilepsy over eight weeks focusing on problem management and goals setting. In addition, the AES 2012 Nurse Awardees were introduced and three presented current epilepsy research and quality improvement projects. It was a great and informative meeting regarding current epilepsy interventions.

Overall, we hope everyone came away with old notions challenged a bit and with some worthwhile thoughts to consider as the field moves forward. Pediatric Epilepsy Elaine Wyllie, M.D. The program featured six dynamic case presentations by renowned faculty. Dr. Jorge Gonzalez-Martinez illustrated the unparalleled value of stereo EEG with depth electrodes for surgical planning in non-lesional opercular / insular epilepsy. Dr. Kevin Chapman highlighted the importance of recognizing steroid responsive encephalopathy associated with autoimmune thyroiditis, aka Hashimoto’s encephalopathy. Dr. Tobias Loddenkemper underscored the role of epilepsy surgery for children with an early developmental brain lesion and ESES. Dr. Elia Pestana Knight focused attention on the approach to treatment of obese children with epilepsy. Dr. Elaine Wyllie explored options for epilepsy surgery in children with MRI abnormalities in the contralateral hemisphere. Dr. Ajay Gupta addressed challenges of epilepsy surgery in children with tuberous sclerosis complex.

The 2013 Nursing SIG will highlight nursing awardee poster presentations. This forum fosters the development of ongoing nursing participation and collaboration in the field of epilepsy. The experience provides the nurses and participants more time to discuss posters than time allotted in the conference hall. Women’s Issues in Epilepsy Lisa M. Bateman, M.D., FRCPC and Mary L. Zupanc, M.D. This year’s SIG focused on controversies in the management of women with epilepsy. Despite the late hour of the session (7:30 p.m. Sunday) and the conflicting scientific and social agendas, turnout was excellent, with approximately 120 audience participants. Using a casebased format, issues including adolescent care, contraceptive choices, seizure control in pregnancy and bone health for women with epilepsy were discussed. An expert panel, including Dr. Cynthia Harden from North

Each of these illustrative cases showcased effective and innovative approaches to challenging clinical problems.

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SIGnals Continued from page 10 Dr. Gupta’s case serves as an example. He presented a 6year-old girl with very frequent daily complex partial seizures and clusters of epileptic spasms, several irritative and ictal onset zones identified on video EEG, multiple bilateral tubers on MRI, and multiple regions of hypometabolism on FDG PET. Through meticulous preoperative analysis and intraoperative electrocorticography, Dr. Gupta and neurosurgeon Dr. William Bingaman were able to identify two predominant tuber clusters for resection, in the right centroparietal and right precentral frontal regions. Their highly gratifying results — greater than 90 percent reduction in seizures and marked improvement in quality of life at three year follow up — remind us that surgery may be beneficial for carefully selected children with TSC.

mouse hypocretin neurons in the hypothalamus by the ketogenic diet. Dr. Liu Lin Thio finished the session with a thought-provoking talk on evidence and hypotheses for metabolic, hormonal, and gut microbiota effects of the ketogenic diet on hypothalamic function. There was some time for discussion, and small discussions continued after the session. Audience members were informed about the next International Symposium on Ketogenic Diet (Liverpool, 2014) and they provided suggestions for future Ketogenic Diet Special Interest Group topics. Pregnancy Outcome Autum Klein and Elizabeth Gerard The Pregnancy Outcome Special Interest Group at the AES 2012 meeting was an update on the international work being done to gather information on pregnancy outcomes in babies born to mothers with epilepsy, with an emphasis on congenital malformations. The six speakers in order were Dr. Norman Delanty from the UK Pregnancy Registry, Dr. Torbjorn Tomson from the EURAP Registry, Dr. Terrence O’Brien from the Australian Pregnancy Registry, Dr. Kimford Meador from the Neurocognitive Effects of Antiepileptic Drugs (NEAD) Study, Dr. Lew Holmes from the North American Antiepileptic Drug Pregnancy Registry, and Dr. Sanjeev Thomas from the Kerala Pregnancy Registry.

As the field of pediatric epilepsy continues to expand and develop, it is increasingly important that we share our experiences and learn from each other. We are grateful to the incomparable American Epilepsy Society for providing the ideal forum for these discussions. Neurostimulation Erika Fanselow and Christopher DeGiorgio The Neurostimulation SIG this year focused on three modalities for seizure control: Cranial Nerve Stimulation, Deep Brain Stimulation, and Responsive NeuroStimulation. Dr. Erika Fanselow gave an introduction on the mechanisms of action of cranial nerve stimulation, specifically vagus nerve stimulation (VNS) and trigeminal nerve stimulation (TNS), and discussed mechanisms both unique and common to each. This was followed by a presentation by Dr. Martha Morrell on what we are learning from intracranial recordings in subjects implanted with responsive neurostimulation (RNS) devices. The data indicates that long-term response does tend to improve over time and that responders may require less stimulation over time. Dr. Paul Boon described recent and compelling original research in his lab on the mechanisms of action of VNS, and presented new work on deep brain stimulation of the hippocampus. Dr. Ian Cook spoke about investigational clinical work on the use of trigeminal nerve stimulation for treatment of depression. The session ended with an engaging debate led by Dr. Selim Benbadis on whether a center can be considered “comprehensive” and not include VNS as a treatment option.

Dr. Delanty presented their findings on malformations in pregnancy, specifically their findings on levetiracetam in pregnancy, which was, at the time, in press with Neurology. In addition, he presented their findings on neurocognitive findings in development, their new research on mechanisms that may cause malformations, and the impact of their findings on prescribing patterns over time. Dr. Tomson presented prior published articles on the dose dependence of malformations, and the change in dose of AEDs across pregnancy. In addition, he presented information on obstetrical outcomes including the distribution of livebirths, abortions, and stillbirths and mode of delivery by AED and seizure control. Dr. O’Brien presented the malformation rates of different AEDs in monotherapy and polytherapy, as well as the risks of major malformations of women treated with AEDs in subsequent pregnancies. Dr. Meador reviewed findings of the NEAD study including IQ and other neurocognitive testing in children exposed to different AEDs in utero, the effects of folic acid according to AED on their IQ, and the handedness of children exposed to AEDs in utero. He introduced the MONEAD study which is an extension of the NEAD study, and looks at obstetrical and neonatal as well as pharmacokinetic parameters as well as neurocognitive effects of AEDs in women with epilepsy pregnancy and their offspring.

Ketogenic Diet Susan Marino, M.D. The 2012 Ketogenic Diet SIG explored “Hypothalamic and Hormonal Issues and the Ketogenic Diet.” It was coorganized by Susan Masino and Elizabeth Thiele. The panel included Christina Bergqvist, M.D., University of Pennsylvania, Kristina Fenoglio-Simeone, Ph.D., Creighton University, and Liu Lin Thio, M.D., Ph.D., Washington University St. Louis. Christina Bergqvist led the session with a clinical perspective on growth, including bone measurements, and hormonal issues comparing among normal children, children with epilepsy and children with epilepsy on the ketogenic diet. There was a general consensus that there is insufficient research in this area, particularly regarding hormonal effects and ketogenic diet treatment. Dr. Kristina Fenoglio-Simeone followed with a basic research perspective on cellular and molecular mechanisms in the hypothalamus, a target of seizure-genic foci via polysynaptic projections, within the context of a ketogenic diet. The kcna1-null mouse lacks potassium channels and exhibits seizures and sleep disturbances that are both ameliorated by the ketogenic diet. She highlighted her emerging evidence for the modulation of kcna1-null

Dr. Holmes reviewed the trends of AED use over time in the Registry, the latest spring 2012 publication from the Registry on the rate of malformations with different AEDs, and new research looking at other neonatal effects of topiramate. Dr. Thomas presented information on rates of malformations by monotherapy and polytherapy AED as well as average pregnancy dose of individual AEDs. Seizure recurrence over time during pregnancy as well as seizure risk by AED dose was discussed. Finally, there was an interesting discussion on fertility in women with epilepsy and their hormonal profiles. Finally, the session was completed with a case discussion in which the panel speakers reviewed their management of AED use in pregnant women with epilepsy in light of the findings presented.

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AESNEWS

WINTER 2013

CALENDAR OF EVENTS March 16 – 23, 2013 65th American Academy of Neurology Annual Meeting San Diego Convention Center http://www.aan.com/go/am13

June 23 – 27, 2013 30th International Epilepsy Congress Montreal, Quebec, Canada www.epilepsymontreal2013.org

May 18 – 24, 2013 6th International Epilepsy Colloquium: Epilepsy Across the Lifespan Cleveland, Ohio http://iec2013.case.edu

September 20 – 21, 2013 2nd International Symposium on Hypothalamic Hamartomas Marseille, France http://www.sympohh2013.mcocongres.com/en/

May 25 – 27, 2013 European Forum on Epilepsy Research Dublin, Ireland, Sponsored by IBE and ILAE http://www.epilepsyresearcheurope.org/

September 30 – October 6, 2013 5th Eilat International Educational Course: Pharmacological Treatment of Epilepsy Jerusalem, Israel http://www.eilat-aeds.com/

June 8 – 11, 2013 23rd Meeting of the European Neurological Society Barcelona, Spain www.ensinfo.org June 19 – 22, 2013 XII Workshop on Neurobiology of Epilepsy (WONOEP 2013) Lake Dupuis, Laurentian Mountains, Quebec, Canada http://www.ilae.org/Visitors/Documents/WONOEP-2013.pdf

December 6 – 10, 2013 AES Annual Meeting Washington, D.C. Registration open in July www.aesnet.org

Building for the Future How many ways are there to say that we, your American Epilepsy Society, need your financial help to continue to provide fellowships, research grants and training programs that help you to treat and cure epilepsy? Over the past few years, you may have heard that more than 10 fellowships and postdocs in epilepsy have been lost due to cuts in corporate or government funding. Now, even the Epilepsy Foundation is decreasing its funding for post-docs and fellowships by half – it is no longer an option for AES to step up and fill the gaps to ensure that research and training opportunities in epilepsy still exist – it is a necessity. Imagine what could be accomplished if every member of AES made an annual contribution of even $10, $25 or $100! If you have not had the opportunity to make a contribution in the past, why not start this year. If you are a previous contributor — thank you — and we hope you will consider increasing your donation. Donations can be made by sending a check made payable to the American Epilepsy Society and indicating the fund of your choice or you can go to our website at www.AESnet.org/contribute and complete the online contribution form. You may direct your contribution to one of the funds listed below or ‘where it is needed most.’ • New Initiative Fund provides support for named awards, lectureships, junior investigator travel awards. In addition, this Fund supports both pre-and postdoctoral research training fellowships that helps strengthen the connection to epilepsy research • The Fritz Dreifuss Epilepsy Fund – Honoring the leadership and passion Dr. Dreifuss brought to the care of his patients, research and the mentoring of young physicians • The Rebecca Goldberg-Kaufman Ethical Neuropsychiatry Award Fund – Raising the consciousness of the importance of psychiatry in epilepsy care • The Lennox and Lombroso Trust supports programs funding fellowships and early career grants for pre- and postgraduates, and newly independent faculty • The J. Kiffin Penry Fund – An award recognizing individuals whose work has had a major impact on patient care and improved the quality of life for persons with epilepsy • The Susan S. Spencer Fund supports a two-year clinical research fellowship designed to provide clinical lab and methodology experience as well as execution of the research project. These training fellowships are designed for new investigators at the beginning of their career.

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