Spring 06_rd 5/24/06 12:48 PM Page 1

NEWSLETTER Volume 14, No. 1

CHILD NEUROLOGY SOCIETY 35th Annual Meeting Program Preview

Wednesday, October 18 7:45 AM – 8:15 AM Historical Descriptions of SMA 7:30 AM - 5:30 PM Victor Dubowitz, MD, NEUROBIOLOGY OF DISEASE PhD, FRCP, DHC IN CHILDREN SYMPOSIUM Hammersmith University London, UK Spinal Muscular Atrophy 8:15 AM – 8:45 AM Supported by grants from the Clinical Classification and National Institutes of Health Disease Heterogeneity (NIH grant 1 R13 NS40925-01), Barry Russman, MD Families of Spinal Muscular Atrophy, Oregon Health & Science the Claire Altman Heine Foundation, Inc., University 35th Annual and the Child Neurology Society. Portland, OR Meeting CME ACTIVITY 8:45 AM – 9:30 AM Moderator: Bernard L. Maria, MD, October 18-21, 2006 Modern Diagnosis and MBA, Jeffrey Edwin Gilliam Chair and Management Executive Director of the Children’s Davis L. Lawrence Convention Tom Prior, PhD Research Institute, Medical University Center/Westin Convention Ohio State University of South Carolina, Charleston, SC Center Hotel Columbus, OH AND Pittsburgh, PA 7:30 AM – 7:45 AM Susan Iannaccone, MD Introduction and Statement of Goals 9:30 AM – 9:50 AM Bernard L. Maria, MD, MBA Question and Answer Session CLINICAL NEUROLOGY OF SMA Moderator: Susan Iannaccone, MD, FAAN University of Texas Southwestern Medical Center, Dallas, TX Continued on page four

In This Issue

President’s Letter 35th Annual ACNN News Personal Registry 2 4 Meeting 7 8 Spring 06_rd 5/24/06 12:48 PM Page 2

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CHILD NEUROLOGY SOCIETY From the President

Springing Forward to Fall

t is hard to believe, with spring having There are, of course, a number of others Ibarely arrived, that preparations are well working hard behind the scenes this year and underway for the annual fall meeting in every year. Foremost among these are the Pittsburgh scheduled in mid-October. Final CNS Awards Committee, chaired this year by ACCME approval of the scientific program, Philip Pearl, and charged with selecting the Ann Tilton, MD followed by distribution of registration Sachs, Hower, and Young Investigator Award CNS President information via regular mail and on-line recipients, and the Scientific Selection registration for the meeting will all unfold Committee, chaired by Gary Clark. Gary’s over the course of the next month. This appointment, like each of his predecessor’s, year’s meeting offers an exciting scientific is for two years. The two year rotation of program in what truly is an exciting venue. chairs on this committee, bolstered by the As everyone who has been to Pittsburgh in extraordinary multi-year commitment and recent years knows, it is a remarkably vibrant collective wisdom afforded by its 12-14 and inviting “renaissance city,” much committee members, strikes a much needed different than the city you may remember or balance of continuity and originality. Gary’s may only have read about from decades ago. two-year appointment gives him the creative A hearty round of applause goes out to Mary license and flexibility to design an educational Curry and Roger Larson for the very extensive curriculum on a larger canvas than one year and largely invisible preparatory work they would afford; what can’t be scheduled this year perform year-round to ensure the success of in a tight three-day framework can be planned this and every CNS annual meeting. Mary’s for the following year; breakfast seminars that comprehensive oversight of the annual “show” well this year, based on attendance meeting goes back to the very first gathering and survey feedback may “grow” into a full in Ann Arbor in 1972. Roger’s work with the scientific symposium next year; ideas generated scientific program committee and with by the many Special Interest Group meetings exhibitors dates back to the Halifax meeting scheduled during the annual meeting may be in 1988. With next year’s meeting set for pitched to the Scientific Program Chair and/or Quebec City and the following year Committee on-site or in correspondence soon scheduled to be held in Santa Clara, they are after; well-thought out and clearly articulated currently setting their sights on the 2009 suggestions entered in the post-meeting on- meeting, all the while maintaining their focus line survey regarding prospective sessions or on the innumerable background details speakers may spark a “conversation” that bears requiring immediate attention to ensure the fruit, if not the next year, then in subsequent success of this year’s meeting, a meeting first years as Gary passes on to his successors the envisioned three or four years ago. resources and insights gained from two years on the front line.

EDITOR CORRESPONDENCE John Bodensteiner, MD Child Neurology Society Printed in St. Paul, MN 1000 West Cty Rd. E, Suite 290 Published Quarterly MANAGING EDITORS St. Paul, MN 55126 Mary Currey Tel: 651/486-9447 I Fax: 651/486-9436 Printed on Recycled Paper Roger Larson [email protected] 50% Post Consumer Waste www.childneurologysociety.org 50% Recycled Fibers Spring 06_rd 5/24/06 12:48 PM Page 3

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The goal, for Gary and for his committee, afforded attendees to review the 150+ is to weave a coherent program abstracts selected from the roughly 250+ choreographing some of the best new work abstracts submitted each year, will ensure the being done on the bench top with the best continued vitality of the CNS Annual Meeting. new practices being developed and offered to our patients in the exam room and at Quickly, on a separate topic: in my last letter I bedside. As any past chair of the committee discussed work done by representatives of the can attest, this is a truly daunting and CNS and the CNF to clarify their relationship draining responsibility, all the more so given and move toward bringing the two entities the growing diversity of sub-specialty and their separate but complimentary missions interests within our subspecialty of child closer together. This is an important and neurology. Recognizing this growing attainable goal for the next two years. Under diversity of interests and needs, and the the sage direction of Carl Crosley, a task force limited framework the annual meeting meeting in Chicago earlier this month made provides to meet them, we are moving significant progress toward meeting this goal. toward development of a program Sincerely, committee with a better balance of representation from the full spectrum of “bench top” to private practice neurologists that make up the Society’s membership. This, along with the splendid opportunity Ann H. Tilton, MD

NEW WEB RESOURCE FOR EPILEPSY RESEARCH OPEN FOR BUSINESS Go to: http://www.epilepsyresearchresource.org Spring 06_rd 5/24/06 12:48 PM Page 4

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CHILD NEUROLOGY SOCIETY 35th Annual Meeting Program Preview continued from page 1

Wednesday, October 18 continued 2:35 PM – 3:05 PM Use of Animal Models in 9:50 AM – 10:20 AM Preclinical Testing Break Arthur Burghes, PhD Ohio State University MOLECULAR MECHANISMS IN SMA Columbus, OH Moderator: Christine J. DiDonato, PhD Northwestern University 3:05 PM – 3:35 PM Chicago, IL Human Trials Kathryn Swoboda, MD 10:20 AM – 10:50 AM Molecular Mechanisms in SMA 3:35 PM – 3:55 PM Charlotte Sumner, MD Question and Answer Session National Institutes of Health Bethesda, MD FUTURE DIRECTIONS Moderator: NINDS Program Director, 10:50 AM – 11:20 AM Jill Heemskerk, PhD, Bethesda, MD SMN Function in the Cell Stephen Kolb, MD, PhD 3:55 PM – 4:50 PM Hospital of the University of Pennsylvania Panel Discussion Philadelphia, PA Darryl De Vivo, MD, Columbia University, New York, NY 11:20 AM – 11:50 AM John T. Kissel, MD, Ohio State University, SMN and Neurodevelopment Columbus, OH Christine Beattie, PhD Mary Schroth, MD, University of Wisconsin Ohio State University Hospital, Madison, WI Columbus, OH Sakamuri V. Reddy, PhD, Medical University of South Carolina, Charleston, SC 11:50 AM – 12:20 PM Douglas Kerr, MD, PhD, The Johns Hopkins Animal Models of SMA Hospital, Baltimore, MD Christine J. DiDonato, PhD 4:50 PM – 5:00 PM 12:20 PM – 12:40 PM Closing Comments Question and Answer Session Bernard L. Maria, MD, MBA

12:40 PM – 2:05 PM 6:00 – 8:00 PM Lunch Opening Reception

TRANSLATIONAL RESEARCH 8:00 – 10:00 PM Moderator: Kathryn Swoboda, MD Movement Disorders University of Utah Salt Lake City, UT 8:00 – 10:00 PM Independently Staged/ 2:05 PM – 2:35 PM Accredited Satellite Symposium Search for Active Compounds Sponsored by UCB Pharma Christopher E. Henderson, PhD Columbia University New York, NY Spring 06_rd 5/24/06 12:48 PM Page 5

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Thursday, October 19 3:30 – 5:30 PM Platform Session 1: Malformation and 7:00 – 8:30 AM Tumors of the Developing Nervous System” Breakfast Seminar 1: Drooling Organizer: Peter Blasco MD, Child Development & Platform Session 2: Epilepsy and Rehabilitation Center, Portland, OR Epileptic Syndromes Breakfast Seminar 2: Epilepsy Case Moderated Poster Session: Epilepsy Management Edward Novotny, MD, Yale University, Doug Nordli, MD, Children’s Memorial Hospital, New Haven, CT Chicago, IL 6:00 – 10:00 PM: Breakfast Seminar 3: RVU’s and You Independently Staged/ Carmela Tardo, MD, Children’s Hospital of Accredited Satellite Symposium Louisiana, New Orleans, LA Sponsored by Abbott Pharmaceuticals 9:00 – 12:00 NOON Symposium II: Presidential Symposium: Cerebral Palsy Organizer: Ann Tilton, MD, President, CNS Friday, October 20 Speakers: Leland Albright, MD, University of 7:00 – 8:30 AM Pittsburgh, Pittsburgh, PA Breakfast Seminar 4: Neurologic Janice Brunstrom, MD, St. Louis Children’s Manifestations of Inborn Errors Hospital, St. Louis, MO of Metabolism Terrance Edgar, MD, Marshfield Clinic, Marshfield, WI Organizer: Amy Goldstein, MD, Mauricio Delgado, MD, Texas Scottish Rite Hospital, University of Pittsburgh, Pittsburgh, PA Dallas, TX Breakfast Seminar 5: Feeding Dysfunction 12:00 - 1:30 PM Organizer: Brian Rogers, MD, Oregon Health Poster Session 1: A, B, C, D Sciences University, Portland, OR 1:30 – 3:00 PM Symposium III: Neonatal Neurology Breakfast Seminar 6: Neurology of and Music Organizer: Frances Jensen, MD, Famous Musicians: In Words Children’s Hospital, Boston, MA Organizer: Phillip L. Pearl, M.D., Children’s Speakers: Michael Johnston, MD, National Medical Center, Washington, DC Kennedy Krieger Institute, Baltimore, MD Donna Ferriero, MD, University of California 9:00 AM – 10:00 AM San Francisco, San Francisco, CA Phillip R. Dodge Young Frances Jensen, MD, Investigator Award Lecture Kevin Staley, MD, Denver Children’s Hospital, Denver, CO Bernard Sachs Lecture

Symposium IV: Early infantile epileptic encephalopathies — a "Interonopathy?" Organizer: Edward Novotny, MD, Yale University, New Haven, CT Speakers: William Dobyns, MD, PhD, University of Chicago, Chicago, IL Harry Chugani, MD, Children’s Hospital of Michigan, Detroit, MI Gary Mathern, MD, UCLA, Los Angeles, CA Jeff Golden, MD, CHOP, Philadelphia, PA Spring 06_rd 5/24/06 12:48 PM Page 6

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CHILD NEUROLOGY SOCIETY 35th Annual Meeting Program Preview continued from page 5

Friday, October 20 continued 3:30 – 5:30 PM Platform Session 3: Injury and Repair 10:00 AM – 12:00 NOON of Developing Nervous System Symposium V: Leukodystrophy Organizer: Adeline Vanderver, MD, Children’s Platform Session 4: Neurogenetics National Medical Center, Washington, DC and Movement Disorders Speakers: Prof. Marjo van der Knaap, Amsterdam, The Netherlands Moderated Poster Session: Clinical Dx/Rx SakkuBai Naidu, MD, Kennedy Krieger Institute, Robert S. Rust, MD, University of Virginia, Baltimore, MD Charlottesville, VA James Garbern, MD, Children’s Hospital of Michigan, Detroit, MI 6:00 – 10:00 PM Adeline Vanderver, MD Reception & Banquet Hugo Moser, MD, Kennedy Krieger Institute, Baltimore, MD Saturday, October 21 12:00 NOON – 1:30 PM Poster Review: E, F, G, H, I, J 7:00 – 8:30 AM Breakfast Seminar 7: 1:30 – 3:00 PM Neonatal Brain Monitoring Symposium VI: Stroke and Epilepsy Organizer: Eli Mizrahi, MD, Texas Children’s Organizer: Elaine Wyllie, MD, Cleveland Clinic Hospital, Houston, TX Foundation, Cleveland, OH Speakers: John Lynch, MD, NIH, Bethesda, MD Breakfast Seminar 8: Nursing Neil Freidman, MD, Cleveland Clinic Foundation, Ricki Hobdell, PhD, RN, Wayne, PA Cleveland, OH Jack Pellock, MD, Medical College of Virginia, Breakfast Seminar 9: Positional Orthostatic Richmond, VA Tachycardia Syndrome (POTS) Elaine Wyllie, MD Organizer: Kenneth Mack, MD, Mayo Clinic, Rochester, MN 1:30 – 3:00 PM Symposium VII: Sleep 9:00 AM – 10:00 AM Organizer: Suresh Kotagal, MD, Mayo Clinic, Hower Award Lecture Rochester, MN Speakers: Suresh Kotagal, MD 10:00 AM – 12:00 NOON Sanjeev Kothare, MD, St. Christopher’s Hospital, Symposium VIII: Future of Therapy in Philadelphia, PA Child Neurology David Gozal, MD, PhD, University of Louisville, Organizer: Evan Snyder, Burnham Institute, Louisville, KY La Jolla, CA Speakers: Speakers & Talks TBA Spring 06_rd 5/24/06 12:48 PM Page 7

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CHILD NEUROLOGY NURSES

Association of Child Neurology Nurses (ACNN) News

he Association of Child Neurology Nurses T (ACNN) is an international nonprofit organization of nurses caring for children with neurological conditions. Membership is open to all nurses caring for children with neurological conditions. Our members have varied academic backgrounds ranging from associate through doctoral degrees. Currently, we have members from the United States,

Canada, the Bahamas, and Iceland. Since the Photo Credit: Ada Hegion inception of the organization in 1984, by a ACNN Officers (L-R): Janet Brucker, Ricki Hobdell, group of nurses working with child Cathy Ascher. neurologists, ACNN has continued with their goal to provide educational offerings at the time of the Child Neurology Society of our total membership. Current membership (CNS) meetings. is 110 with a significant percent of members being advanced practice nurses either as The mission of ACNN is to promote the Clinical Nurse Specialists or Pediatric Nurse health of infants, children, and adolescents, Practitioners. provide the highest standard of care to those with neurological problems, contribute Plans for the current year include a toward improving quality of life for these strengthening of committees. The research families, and provide a forum for the committee is beginning to provide professional growth of the membership. information about the research process as ACNN promotes nursing research, education, well as provide succinct updates of current and collaboration toward the goal of research on our web site. Secondly, the excellence in clinical practice. clinical practice committee is refining and finalizing telephone triage guidelines for Attendance at the annual ACNN meetings presentation to the CNS Practice committee. has increased every year from an initial Finally, regional planning is addressing 25 – 30 to the 80 who attended in 2005. formation of regional support and This represents seventy three percent (73%) conference networks.

ACNN Travel Grant ACNN gratefully acknowledges the Child Neurology Society contribution of Travel Grants for ACNN members. Two Travel Grants ($500 per grant) are available to current ACNN members. The deadline for application is June 16,2006. For information please contact ACNN President Ricki Hobdell at (215) 427-5113 (w).