February 2013 FACES E-Newsletter
- The Greenstein H.O.P.E. Fund First Annual 5K
- Anthony Mammina's Story
- HEP (Human Epilepsy Project)
- A Healer in Harmony
- tDCS for Memory Difficulty in Temporal Lobe Epilepsy
- Autism Studies
- New York Arts
- Fundraising Corner
The Greenstein H.O.P.E. Fund First Annual 5K
Sunday April 7, 2012, Livingston High School Oval, Livingston, New Jersey
FACES friends Faith and Marc Greenstein are dedicated to making a difference in the lives of children with pediatric epilepsy. Recently, the Greensteins established a special fund at Saint Barnabas Medical Center to Help Overcome Pediatric Epilepsy. The Greenstein H.O.P.E. Fund will enable nationally recognized neurologists and pediatricians to come together to share innovative approaches to epilepsy care, research breakthroughs, and the latest thinking on treatment options.
In April 2008, Faith and Marc's son, Ethan, was diagnosed with Sturge-Weber Syndrome, a primary symptom of which is epilepsy. Ethan has had multiple stays in the Pediatric Intensive Care Unit at Saint Barnabas Medical Center due to his seizures.
The Greenstein family, in partnership with Saint Barnabas Medical Center Foundation, is dedicated to raising philanthropic support to better understand and manage epilepsy and to enhance the lives of children and families living with this complex condition.
Please join the Greenstein family as they raise support and awareness for children with epilepsy cared for at Saint Barnabas Medical Center. The Strides for HOPE 5K and 2K Family Walk begin at 10:00 AM on Sunday April 7th at the Livingston High School Oval. Runners and walkers will enjoy a USATF-certified course that offers quick and flat sections with a few inclines. Timers at miles one and two, water stations, and a clock finish are featured.
Kids' sprints are open to children 12 years and younger, door prizes including an iPAD will be awarded, and family-friendly entertainment and refreshments will be on hand. Race shirts are guaranteed to pre-registrants and while supplies last, on event day.
Run and Walk Participants 13 and older; $20.00 pre-registration; $25.00 day-of registration. 2013 USATF-NJ Member Participants; $17.00 Kids' Sprint Participants, Runners, and Walkers age 12 and under: Free
For more information or to register online, please visit - http://saintbarnabasfoundation.donordrive.com/event/hope5k/
Anthony Mammina's Story
An inspiration to all! By: Jennifer Mammina
It was another Saturday morning getting up early and driving almost an hour to watch our oldest son Anthony compete in a high school 5K cross country meet. Anthony started running about a year ago and is an average runner with so much potential. He finally found a sport that he liked and could be competitive in. There weren't too many rules that needed to be followed – basically run fast! You see, Anthony has a seizure disorder that has affected his learning ability, he is intellectually delayed. Give him too many instructions and he will get confused. Running has given him the freedom to interact with typical kids his age and make friends.
The race started as usual – chaotic. Time went by and the first runners came in as usual. Then we started to get a little worried when Anthony did not come out of the running trails in his usual time. Then a few minutes later he came running out past the finish line directly to the medical staff. He was yelling for them to help – a runner was down. The medical staff ran back with Anthony to the edge of the trails where a young man from another team was laying on the ground. The runner had an asthma attack and passed out on the course about a half mile from the finish line. Anthony came upon the downed runner and without thought stopped to help him. The runner was unconscious and face down in the dirt. While other runners kept on going to finish their race, Anthony's only concern was for the athlete on the ground. Anthony shook the young man to wake him and saw that he had a rescue inhaler, which he helped the young man take. He then stopped a teammate of his and the two of them carried this young man about a ½ mile to the edge of the trail so that he could get help.
When the medical staff finally arrived, they debriefed Anthony about where and how he found the young man and what first aid he administered. They said that they didn't know what would have happened if the young man hadn't been helped as quickly as he was.
For his actions on that day, Anthony was awarded the NJROTC Meritorious Achievement Award. This is the highest award a cadet can achieve.
Anthony also enjoys other activities such as Karate (he is a junior black belt), Boy Scouts (he just earned life scout), NJROTC 3rd Year Cadet and swimming. Anthony also just completed his second ½ Marathon at Walt Disney World in 2:19.
While Anthony has lived with a seizure disorder his whole life, he has not let it dictate how he lives his life. Anthony is currently about a week away from having surgery at NYU for his seizures. The doctors there are very confident that the surgery will work well for him. Let's keep our fingers crossed for a seizure free life.
Human Epilepsy Project
The Human Epilepsy Project (HEP) is a research project funded by The Epilepsy Study Consortium (ESC), a nonprofit patient and science advocacy organization. The doctors and staff who work with the ESC are some of the doctors you know from Epilepsy.com
A Healer in Harmony
Music May be the Best Medicine of All
Daniel Luciano, MD is not only someone who heals the epilepsy and seizure community, but is also a musician. (pages 11-13)
S12-03395 Efficat of TDCS for Treating Working Memory Dysfunction and Depression in Temporal Lobe Epilepsy
By: Anli Liu, MD
Memory difficulty and attentional deficits are the most common cognitive complaints for patients with temporal lobe epilepsy. Furthermore, depression is the most frequent psychiatric comorbidity of epilepsy, affecting up to 50% of patients with temporal lobe seizures. Depression in epilepsy is an independent predictor of poor quality of life, increased suicidal risk, and higher medical costs. While these cognitive and psychiatric problems may affect quality of life even more than seizure frequency, our therapies are currently very limited.
Transcranial Direct Current Stimulation (tDCS) is a method of brain stimulation delivering a gentle, low intensity current through the scalp to influence brain activity. After several decades of experience, tDCS has been demonstrated to be safe and extremely well-tolerated. tDCS has never been reported to cause a seizure. More importantly, several recently published studies demonstrate that tDCS can have a positive effect on memory and mood.
We are currently enrolling subjects for a study to see whether tDCS can improve memory and mood symptoms in patients with temporal lobe seizures. Not only will the study develop a safe and inexpensive technology for therapeutic use, but it will help us to better understand the biological basis for memory dysfunction in epilepsy.
The study is being led by Anli A. Liu, MD MA, Assistant Professor of Neurology at NYU School of Medicine. Dr. Liu completed her BA at Stanford University, MD at the University of California San Francisco, neurology residency at New York Presbyterian-Weill Cornell and fellowships in clinical neurophysiology and cognitive neurology at Beth Israel Deaconess-Harvard Medical School. Dr. Liu's clinical practice at the NYU Comprehensive Epilepsy Center involves managing adult epilepsy, with an emphasis on addressing the cognitive aspects of epilepsy and other neurologic disorders. Her research interests involve using both non-invasive and invasive neurostimulation techniques to understand the neural mechanisms of memory and learning, with the ultimate goal of developing therapies to remediate these processes in patients with epilepsy and other neurologic diseases.
By Alcibiades Rodriguez, MD
Please click on the below links to read
New York Live Arts Launches Live Ideas, an Annual Festival of Arts and Ideas
Inaugural Live Ideas festival explores The Worlds of Oliver Sacks from April 17 – 21, 2013
Confirmed participants include Oliver Sacks, guest curator Lawrence Weschler, Bill Morrison, Alva Noë, V.S. Ramachandran, Tobias Picker with Orchestra of St. Luke's, Donna Uchizono, Marsha Ivins, Wendy Lesser, Jumaane Williams, Robert Krulwich, Orrin Devinsky, MD, Joe Ledoux and many more
New York Live Arts' Executive Artistic Director, Bill T. Jones, today announced the creation of Live Ideas, the latest program initiative for the Chelsea-based organization that has become an internationally recognized destination for innovative movement-based artistry and artists actively engaged with the political, intellectual and cultural currents of our times. Taking place each spring, Live Ideas will concentrate on a different theme, explored through conversation and artistic presentations over several days. The inaugural festival, taking place Wednesday, April 17th through Sunday, April 21st, 2013 at New York Live Arts is themed The Worlds of Oliver Sacks.
"Live Ideas, as an annual event at New York Live Arts, will be distinctive in its explorations of the interplay of creative expression and the world of ideas," said Jones. "We are extremely pleased that the first edition of the festival also affords us a rare opportunity to collaborate with the inimitable Dr. Sacks. Perhaps more than anyone in recent history, Dr. Sacks has contributed to our growing understanding of the role of creative expression within the mind-body connection."
The acclaimed neurologist, who celebrates his 80th year in 2013, is the author of such best-selling works as Awakenings, The Man Who Mistook his Wife for a Hat, Musicophilia and Hallucinations. Called "the poet laureate of medicine" by the New York Times, Sacks will help to kick off the first edition of Live Ideas on April 17th, joining Jones and celebrated non-fiction writer Lawrence Weschler on the opening night of the festival for a keynote conversation. Weschler, a long-time friend and associate of Sacks', is the guest curator for the first edition of Live Ideas. Comprised of more than 20 events across five consecutive days, the series will include a wide array of performances, films, discussions and more.
"Live Ideas will combine dance and the performing arts with big ideas, and I am honored to be involved in this inaugural festival," says Sacks. "Live Ideas brings together a number of my own passions - music, ferns, cephalopods among them - alongside many of the neurological conditions I have spent a lifetime studying: Parkinson's disease, Tourette's syndrome, stereo vision, etc. The connections of these conditions with the dramatic arts is a deep one, and I look forward to seeing what comes out of this first annual Live Ideas festival (and the many more to come)."
As guest curator of Live Ideas, Weschler has brought together an impressive and eclectic list of participants, showcasing works of art and sparking conversations that engage the prevalent themes in Sacks' works. "Bill T. Jones and I agreed early on that the first Live Ideas festival would focus on the intersection of ideas and the body: which is to say, the body-politic, mind-body, body-soul and so forth," explained Weschler. "For this first iteration, what better subject than the worlds of Oliver Sacks. Both a great neurologist and a profound humanist, he constantly evinces the embodiment, the incarnation and the triumph of the individual human spirit across a world of challenges - a subject we will be surveying across an array of lectures, panels, performances, films and more."
Participants include philosopher Alva Noë, directors Karen Kohlhass and Kim Weild, neuroscientists Joseph LeDoux, Aniruddh D. Patel and V.S. Ramachandran, Nobel Laureate Roald Hoffman, astronaut Marsha Ivins, marathon cold-water swimmer Lynne Cox, writer Wendy Lesser, Radiolab's Robert Krulwich and many more. Featured works include a newly commissioned short film by award-winning filmmaker Bill Morrison, created by repurposing original archival footage of Dr. Sacks working with patients; fully-staged productions of Nobel Laureate Harold Pinter's play, A Kind of Alaska, based on Sacks' book Awakenings and performed both in American Sign Language and spoken word; a new dance-theater work by acclaimed choreographer Donna Uchizono that draws upon the themes of perception central to Sacks' work; and a performance of a ballet score, also based on Awakenings, by renowned composer Tobias Picker with the Orchestra of St. Luke's.
"With Live Ideas, we are creating multiple entry points for audiences to understand and explore some of the underlying ideas expressed through movement-based art," said New York Live Arts CEO Jean Davidson. "Throughout his career, Dr. Sacks has articulated the complex relationships between mind and body, which makes his work a compelling focus for the inaugural season. We are grateful for his participation in this new program, which is underwritten by the Ford Foundation and other generous supporters."
Live Ideas is made possible by the Ford Foundation. Additional support is contributed by The Rockefeller Foundation NYC Cultural Innovation Fund, The JJC Foundation, The Opaline Fund, the The Samuel M. Levy Family Foundation and the Theatre Development Fund. Promotional partners include the WNYC, New York Observer and Standard Hotels.
All events will take place at New York Live Arts' theater and studios, located at 219 W 19th Street, between 7th and 8th Avenues. The festival includes both free and ticketed events. Tickets go on sale for New York Live Arts Members and Associate Artists today, and general public may begin purchasing tickets on February 8, 2013. A flexible and inclusive festival pass is also available.
Tickets may be purchased online at newyorklivearts.org/liveideas, by phone at 212-924-0077 and in person at the box office. Box office hours are Monday to Friday from 1 to 9pm, and Saturday and Sunday from 12 to 8pm.
For more information, please visit the Live Ideas microsite at www.newyorklivearts.org/liveideas.
FACES Gala 2013 is scheduled for Tuesday, March 5, 2013 at Pier Sixty at Chelsea Piers. Cocktails and silent auction will start at 6:30pm, followed by dinner and program at 8:00pm. Leon and Tzili Charney, pillars of business and philanthropic communities, will serve as Gala Chairs, and we are further delighted that Leon Charney will be the honoree, Roger Erickson will serve as the Auction Chair and Seth Meyers of Saturday Night Live as the Master of Ceremonies. Funds raised from the evening will provide for life- enhancing programs in cutting-edge research, clinical care, education and awareness programs, and community building events. PLEASE CLICK HERE TO READ MORE
FACESforward has raised $235,000 since 2010. In 2013, with your help, we hope to double that amount. All donations to FACES and FACESforward are fully tax-deductible. Please visit our FACESforward WEBSITE to make a CONTRIBUTION
PEACE OF MIND Lecture Series & Annual Epilepsy Conference
SAVE THE DATE
FACES is pleased to introduce a series of cost-free events in support of patients, caretakers and parents who are dealing with the daily challenges of epilepsy and seizures. Our Peace of Mind events are intended to provide education, tools and resources, insight and possibly a new perspective to a community who are the foundation of the FACES family.
Peace of Mind Lecture Series
Tuesday, March 19, 2013: Mood Disorders and Epilepsy
Presented by: Dr. Scott Hirsch
Wednesday, June 20, 2013: Navigating the School System
Presented by: Gary S. Mayerson, Attorney at Law
Bookmark our Peace of Mind web page, www.nyufaces.org/peaceofmind, for details on the location of Dr. Hirsch's March 19 lecture and to find a link to register. Attendance is always free. You may also email us at email@example.com to be put on our mailing list.
The Annual Epilepsy Conference is open to anyone interested in learning about news on epilepsy and seizures – patients, caregivers, parents and medical professionals alike. There is no cost to attend this daylong event.
Annual Epilepsy Conference: Sunday, May 5, 2013