March 2014

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MARCH 2014 FACES E-NEWSLETTER

  1. CEC Spotlight: Karen Starner, NP
  2. Recipe of the Month
  3. Faces Noteworthy Press
  4. Letters of Hope
  5. Team Faces at the 2014 New York City Half Marathon
  6. 12 Myths About Epilepsy
  7. Brain Awareness Week

1) CEC SPOTLIGHT: KAREN STARNER, NP

Karen Starner, one of two adult acute care nurse practitioners working in the Comprehensive Epilepsy Unit (known as HCC 12), has been an integral member of our staff since 1996. After earning her associate's degree in nursing from Middlesex County College in New Jersey, Karen worked in a medical-surgical unit at John F. Kennedy Medical Center in Edison, New Jersey. There, she developed her skills in post-operative care of complex gastrointestinal cases and peripheral vascular care, and broadened her knowledge of general medicine and surgery. While working part time, Karen pursued her Bachelor of Science in Nursing at Rutgers University.

Upon graduation in 1989, she traveled throughout Europe before moving to New York to work at New York University Medical Center. At NYU, she climbed the clinical ladder to become a Senior Nurse Clinician and thrived in caring for critically ill neurosurgical patients and their families. Completing her Master's Degree in Nursing at New York University, Karen had the great fortune to join Dr. Orrin Devinsky and his highly skilled epilepsy staff. Now considered to be an "expert" in epilepsy, she continues to care for the patients and families she considers extended family. Working alongside a dedicated, caring nursing staff, truly exceptional physicians and hard working EEG technicians, Karen looks forward to each day wondering what joys and surprises will unfold.


2) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

March is National Nutrition Month (NNM). NNM is a nutrition and education campaign created annually by the Academy of Nutrition and Dietetics (ADA). This campaign promotes the importance of making informed food choices and developing healthy eating and physical activity patterns. While it is important to maintain a healthy eating and exercise routine all year round, it is appropriate that March is NNM because it is right between winter and spring. We might have gained some weight over the winter, or neglected our exercise routine because of the cold weather. NNM is a nice reminder to treat your body well and improve or maintain a healthy lifestyle.

In addition to NNM, March 12 is also Registered Dietitian Nutritionist Day. An RDN is an expert professional in food and nutrition. On this day Registered Dietitian Nutritionists are recognized for their nutritional services and commitment to helping people lead healthier lives. Anyone can call themself a “nutritionist” but an RDN has completed many levels of training and education established by the ADA.

One healthy tip all RDNs will agree on is to start the day with a healthy breakfast. Breakfast is important for everyone and it gives you energy to start the day. For this month’s recipe, I will show you how to make an easy, healthy and hearty breakfast- chia seed pudding. “Chia” is an edible seed that comes from the plant Salvia Hispanica, which was grown in Mexico and cultivated by the Mayan and Aztec people. Chia seeds have recently gained popularity due to their nutrition profile. They are high in Omega-3 fatty acids, protein, fiber, antioxidants and minerals. Chia seeds are also energizing and filling.

This recipe goes great with this year’s NNM theme, "Enjoy the Taste of Eating Right." As consumers, we are more likely to eat what we enjoy as the taste of food adds great pleasure to eating. Try this seed in a variety of ways to cater to your own personal taste preferences. While you can add it to your oatmeal or smoothies, I enjoy making it into a pudding. Make it your own by adding your favorite toppings or one of my topping ideas.

VANILLA CINNAMON CHIA SEED PUDDING
By: Michele Angel

Yield: 2 servings
Nutrition per serving (without toppings): 148 kcals, 6.2g fat, 6.5g carbs, and 8.4g proteins.

Ingredients: 2 tablespoons + 1 teaspoon raw chia seeds
1 cup unsweetened almond milk
½ teaspoon vanilla extract
¼ teaspoon cinnamon
1 tablespoon coconut sugar or any other sweetener

Directions:

  1. Combine all ingredients into a jar with a lid and shake it well
  2. Let it sit the refrigerator for at least 2 hours or overnight
  3. A gelatinous, tapioca like pudding will form
  4. Stir before serving to make sure there are no clumps
  5. Serve cold, with fresh fruit and nuts, or try one of these tasty toppings

Try some of these tasty toppings:
Chopped walnuts, sliced banana, cinnamon, kiwi, clementine, slivered almonds, dried cranberries, berries, orange zest and drizzled honey. Try any fruit, nuts, granola or dried fruit of your liking.


3) FACES NOTEWORTHY PRESS

Top 10 National Press Articles

  1. We need Proof on Marijuana
  2. Family Wants Chance At Medical Marijuana
  3. Parents Eye Drug With Marijuana Component to Treat Child Epilepsy
  4. European Epilepsy Day: Mother who almost lost her son says more must be done to educate public
  5. Neuron Chatter: Stigmatised and misunderstood, people with epilepsy find little help
  6. Rare brain surgery restores health of seven-year-old epilepsy sufferer
  7. The boy who writes songs by blinking
  8. Senator withdraws bills to legalize hemp oil extract
  9. Improving treatment, support groups help locals manage epilepsy
  10. One in three would still put something in mouth of person having seizure

4) LETTERS OF HOPE

Do you have a letter of hope you’d like to share in our future newsletters? If so, please contact Ms. Robin Dunn Fixell at rdunnfixell@yahoo.com for more information

1) ACCEPTANCE IS MY KEY TO SUCCESS
By: Alexandra Nicklas

How do I pursue my academic dreams? How do I date, socialize and live my life to the fullest, despite having partial epilepsy? I had a difficult time dealing with my medical condition, until I realized that accepting it was the key to fulfilling my future dreams and desires.

The first day of my freshman year of college marked my introduction to epilepsy. I was eating dinner in the cafeteria with my new friends when I choked on a bite of pizza; my right arm grew numb, and I soon started seizing, falling unconscious. Minutes later, I awoke on a stretcher in an ambulance on the way to the hospital.

Returning to school from the hospital, I felt embarrassed and fearful; I wasn't sure what the future would hold for me. All I knew was that I was scared, had a lot of anxiety and didn't want to have another seizure. Initial EEG's and visits to see Dr. Devinsky frightened me. I always panicked during routine EEG's and I felt uneasy during appointments at the NYU Comprehensive Epilepsy Center. I could not accept my epilepsy and carried on my daily living while trying to ignore the possibility of having future seizures.

In August 2011, I was struck by panic attacks and grew so fearful, I developed agoraphobia--finding it difficult to leave my house. I realized that it was time for me to change my outlook on my condition, which meant making the commitment to take the medications I needed to manage my seizures and anxiety. I knew that I didn't want to stop living just because I had epilepsy and I slowly learned to stop being so hard on myself; I had to accept my condition.

I know now that, with dedication and determination, I can live a successful life--even with partial epilepsy, and I have decided to become a speech therapist, helping individuals with epilepsy. In the fall, I will enter graduate school in pursuit of a masters degree in speech-language pathology. In addition, with Dr. Devinsky's support, I joined FACES as a member of the steering committee.

While I was once a girl who felt extremely anxious about her epilepsy, I have grown into a more confident and compassionate young woman who is now less fearful of having future seizures. The people in my life, including Dr. Devinsky, always tell me to look at the positives, rather than the negatives. As hard as it may be not to see what makes me different from individuals whose lives are not touched by epilepsy, I have learned over the years that my positive outlook gets me through my daily struggles. Of course, like everyone else, I have my bad days, but, in looking at the positives and accepting my condition, I am able to overlook a negative mood and envision the brighter possibilities.

2) AN INCREDIBLE JOURNEY
By: Anonymous

My daughter was born with a giant cavernoma on the left side of her brain. We had no idea that something was wrong until she had a 30-minute seizure at the age of two and a half. At the hospital, we were told of her condition by Doctor Jeffrey Wisoff, an amazing pediatric neurosurgeon and the director of the pediatric neurosurgery division at NYU Langone Medical Center. Despite the cavernoma’s large size, he advised us to do nothing, unless she needed medication for recurring seizures.

For the next seven years, my daughter was fine, with the exception of having an occasional seizure when she was sick and had a temperature that rose suddenly. Medication was not necessary. But that was until she reached puberty; that’s when all of the fun started. She began having seizures every three or four months, and was given Trileptal, to no avail. Switching to Kepra and then to Onfi (which made my daughter sleepy and zombie-like) did not stop the frequent seizures either.

We consulted a number of neurologists, all of whom were excellent. We first saw Dr. Daniel Miles at NYU, then met with Dr. Steven Wolf at Beth Israel Medical Center, and returned to NYU to see Dr. Judith Bluvstein for a second opinion. In addition to the fact that none of the medications were working, my daughter’s reaching puberty and attending a high-pressure gifted and talented middle school did not help the situation.

Once we met with Dr. Bluvstein in April 2013, we could not leave her care. She spoke frankly, and, unlike other doctors (who, I believe, were truly excellent) was pretty pushy—pushy in the best possible way!

She did not just render advice; she insisted that we follow her lead. This required serious sacrifices and really tough decisions.

Dr. Bluvstein inherited us during a “crisis.” My 12-year-old daughter suddenly started having almost daily seizures at school—during exams—and she became extremely tired and depressed as a result of her high-dosage medications. She could no longer function.

Dr. Bluvstein, who barely knew us, dealt with my daughter’s constant emergencies, and she not only exchanged emails with me every day, she also spoke countless times with me and school officials. She treated my daughter as if she were her own child and she gave me really sound advice.

In the seventh grade, when my daughter got so much worse that she could no longer attend school, Dr. Bluvstein contacted school officials to get my daughter home instruction as soon as possible. She took charge of my daughter’s epilepsy, holding my hand while we made the difficult decision about surgery, and later scheduling tests and assembling the finest team of doctors for us.

Seeking a second opinion, we followed Dr. Bluvstein’s advice and met with Dr. R. Michael Scott, a neurosurgeon at Boston Children’s Hospital, where we also saw epilepsy specialist Dr. Alexander Rotenberg for TMS motor mapping before the surgery.

Boston’s doctors communicated with our New York doctors (mainly Dr. Bluvstein, who coordinated discussions, and Dr. Wisoff), making for a true team effort. Having the surgery was a hard decision to make, since my daughter’s tumor was located directly on top of her motor area and there was always a risk of complete paralysis. We were told that immediately after the surgery, my daughter would not be able to walk, use her right hand or speak, and that she would require OT and PT services.

I have to say that there was no competition among the top professionals in the epilepsy and neurosurgery departments. Dr. Scott, Dr. Howard Riina, Dr. Wisoff, Dr. Michael Smith, Dr. Orrin Devinsky and Dr. Rotenberg all knew each other, and Dr. Bluvstein translated all of the medical information to me and my daughter. I was also surprised that Dr. Devinsky had contacted Dr. Rotenberg two months before my daughter’s surgery to see if his new and experimental procedure would be suitable for her. And it was without even seeing us! So, “thank you,” Dr. Devinsky and your wonderful NYU epilepsy team!

My daughter did very well after the complicated surgery and Dr. Bluvstein’s hospital visit made us feel amazing and truly cared for. Despite significant weakness to her right side, my daughter, after two weeks of intensive rehab at Rusk, was able to return to school three weeks later. Even having daily seizures, she managed to finish seventh grade with a 90 average!

It’s been six months since my daughter’s surgery and she is seizure-free and off all medication. Although her right hand is still weak, she is back to her normal, cheerful, funny, beautiful self. She enjoys life and doesn’t need to worry about having a seizure in front of her eighth-grade class. A talented artist, my daughter will apply to La Guardia High School of Music, Art and Performing Arts.I am forever grateful to the NYU Langone team for what they did for my daughter. All of the doctors involved in her care have shared in the details of her progress, and Dr. Bluvstein and Dr. Renat Sukhov (at Rusk) have now become my personal friends.

ONE FINAL NOTE: Four days after her daughter’s surgery, the writer wrote a letter to Dr. Robert Grossman, CEO of NYU Langone Medical Center, thanking him for the amazing care and professionalism her family experienced at NYU and commending the impressive teamwork employed by doctors at NYU and Boston Children’s Hospital. She also acknowledged Dr. Bluvstein (the “’glue who held everything together”), Dr. Wisoff, Dr. Riina, Elizabeth Seiter, RN (Dr. Riina) and Jessica Lessing, RN (Dr. Wissof).

3) ONCE A TEACHER, ALWAYS A TEACHER
By: Beth Emmel

I am a 47-year-old mother of two with complex partial epilepsy. I have a degree in elementary education and have taught for 13 years. Lack of understanding and acceptance of epilepsy have interfered with my teaching career and my life, and, with the help of a very supportive husband, I have stayed home the past 11 years to raise my beautiful children. When my children entered school, I started doing community service at the church food pantry. There I made special friends who accepted me and wanted to learn more about my epilepsy.

Unlike other moms in Suffolk County, Long Island, where car travel is the primary mode of transportation, I ride my bike to school events and take public transportation. Because I am unable to drive my children to play dates or after school programs, I sometimes feel that my epilepsy is the reason they are excluded from activities. At times, if we don't have transportation, we will ride our bikes to a friend's house. Learning that we may have to ask for help from others--and that it is also important to "pay it forward"--my kids have grown as individuals.

My young children have been very strong, making sure I have been safe and comfortable during a seizure. At times I would have 15 seizures a month--in the shower and pool, at the bus stop and school events. They have always kept their cool, unlike some adults who have panicked.

In 2011, I had a brain mapping with Dr. Werner Doyle at NYU Comprehensive Epilepsy Center. He told me I had a genetic form of epilepsy called periventricular heterotopia, wherein brain cells do not migrate properly during development of the fetal brain. I was not a candidate for a lobectomy, which could damage my speech. After a long talk about my taking responsibility for my condition, I decided I was going to stop feeling sorry for myself. I'd take control of my seizures by taking my scheduled medication and staying away from alcohol, which would lower my seizure threshold.

Six months after a rough start regulating my medication and dealing with side effects, I was doing well--thanks to exercising, keeping up with my medication and seeing Dr. Ruben Kuzniecky for routine exams. As I approached my one-year goal of being seizure-free, I felt like a new person. I could think clearly, and my memory was improving because I wasn't seizing 10 to 15 times a month.

Then it happened. My son's play date at our house was cancelled when a boy's parents discovered that I had epilepsy. I realized it was time to educate parents, students, teachers and administrators about epilepsy and seizure first aid.I took small steps, contacting my children's teachers and the school principal and asking if I could have 15 minutes to speak to the class. I made an age-appropriate activity packet that could be shared with family members. During the discussion, the students asked what it felt like to have a seizure, and they shared stories about people close to them who had epilepsy, as well as myths they had heard. Fifteen minutes turned into a 45-minute discussion!

In November 2012, I was one-year seizure-free and in control of my body! My kids and I brought purple donuts to school and seizure first aid information for students to bring home. Again we spread the word.

But I wanted to take the educational process to the next step. With the help of another parent who had epilepsy, I planned a school-wide Epilepsy Awareness/Seizure First Aid presentation. In addition to posters, I acquired a FACES "You Can Do This" seizure first aid DVD. Students wore purple for the special day and some made presentations about individuals--past and present--with epilepsy. My co-parent and I spoke about our leading successful lives and we also informed teachers about the side effects of epilepsy medications which can interfere with a student's performance.

In November 2013, during my son's football practice, a mother of a young player overheard me talking to a friend about epilepsy. She told us that her son's school had introduced a great seizure first aid program and when I told her that I had created the presentation, she said that her family had learned so much from it. At that moment, I thought to myself: "You can do it!"

The following day, I rode my purple bike to Boyle Road Elementary School and asked the principal, Mrs. Polychronakos, if we could plan another school-wide Epilepsy Awareness Day. With her support, my nine-year-old son Michael and 11-year-old daughter Danielle not only made posters, but stood in front of more than 400 students and conducted the entire program, passing the microphone back and forth between them while speaking about epilepsy and seizure first aid!

That same week, I biked to the John F. Kennedy Middle School and spoke with the principal about having an epilepsy program. Mr. Fama showed my daughter how students and parents could visit the school's website and see the Power Point presentation she had helped create. She was so proud! Not satisfied with stopping there, I walked to my local high school and met with the assistant principal and gave him a presentation created by my husband for older students. He suggested that I create a “fact-a-day” for the month of March--so that is my new project. My goal is to have an epilepsy awareness/seizure first aid program in every Suffolk County school. Seizure first aid posters should be displayed in every school building.

I remembered all the years I wanted to fit in, to be accepted at school and work, to fit in with all the other moms, and to be able to explain to others about my epilepsy. I now wanted to share these materials with other families going through the same situation. I visited Stony Brook Hospital on Long Island and gave the materials to the head pediatric neurologist Dr. Mary Andriola, who always stressed the importance of support groups. Following her lead, I am finally going to join one, share the information I have and look forward to learning more about my epilepsy. I hope to gain the confidence back that I lost when I lost my teaching job.

I have come a long way in the last 27 months! I've learned that I needed to accept my epilepsy and educate myself if I wanted to teach others about it. My family has been so lucky to have the support from the Comsewogue Public School District and from supportive friends and family. I may no longer be a classroom teacher, but I can educate others about epilepsy and about accepting others; and I can help families with epilepsy find the support they need to take control. Once a teacher, always a teacher.


5) TEAM FACES AT THE 2014 NEW YORK CITY HALF MARATHON

Team FACES at NYU Langone Medical Center is proud to be running in the 2014 New York City Half Marathon on Sunday, March 16, 2014. Our athletes aim to spread awareness and support for the mission of FACES while completing the 13.1 mile tour of NYC.

The FACES mission is to improve the quality of life for all people affected by epilepsy through research, education, clinical programs, awareness and community building events. No seizures, no side effects – that is the goal.

We are proud to be part of the half marathon and look forward to joining thousands of others as they race on behalf of many important, meaningful causes.

FACES cannot thank our runners enough for their commitment to our mission and to the families of our epilepsy community. Please read more about each runner below.

Consider making a donation to each of their pages!

MEET THE RUNNERS:

NOEL SIMSIMAN

Noel is raising funds for FACES through the 2014 NYC Half Marathon because he firmly believes in our mission. Every day, FACES spreads epilepsy awareness throughout the world and provides support to all those affected by epilepsy. He grew up living with epilepsy and receiving treatment through the years. Running this half marathon for FACES is one way he can give back to all those that have taken the time to treat patients, spread awareness, and provide medical advances in epilepsy treatment.

CLICK HERE FOR NOEL’S FUNDRAISING PAGE

DAVID FARKAS

As a father of a daughter with epilepsy, there is no worse feeling than being unable to stop the suffering in your own child. David decided to run the half marathon because he feels that more needs to be done to help his daughter. He is very hopeful that the funds raised by contributions from the half marathon will aid in the research needed to find a cure not only for his daughter, but for the millions of individuals and families dealing with the day to day haunting shadow that a seizure disorder brings.

CLICK HERE FOR DAVID’S FUNDRAISING PAGE

ELIZABETH DALY

Running the half marathon is important to Elizabeth, as she has suffered from epilepsy since the seventh grade. She has been able to lead a fulfilling, healthy life, but not without medication changes and side effects, dosing errors and uncertainty. By being an epilepsy advocate, she hopes to improve the lives of people that have epilepsy.

CLICK HERE FOR ELIZABETH’S FUNDRAISING PAGE

STEVEN LADEW

Steven’s family has actively supported FACES ever since his daughter, Naomi was diagnosed with epilepsy in 2010. He is excited to be able to raise awareness and funds for FACES. He hopes to fulfill the broader mission of improving the quality of life for all those affected by epilepsy and seizures.

CLICK HERE FOR STEVEN’S FUNDRAISING PAGE


6) 12 MYTHS ABOUT EPILEPSY

By Sloka Iyengar, PhD

A myth is an idea or story that is believed by many people, but is not true. Epilepsy is a neurological disorder that has been documented and described in ancient texts since time immemorial. Without the medical and scientific knowledge that we have now, ancient cultures tried to understand epilepsy by using theories about Gods and demons, punishment and gifts for past sins. Since we now know that epilepsy is caused by abnormal activity in the brain, there is a desperate need to disseminate accurate information about epilepsy.

The ‘epilepsies’ represent a heterogeneous disorder with a variety of causes and symptoms. Although people with epilepsy can lead perfectly normal lives, individuals can suffer a lot of stigma due to ignorance that is prevalent in the society. Below, we will present some of the commonly held myths in society about epilepsy and the actual truth behind them.

MYTH #1 - PEOPLE WITH EPILEPSY ARE CRAZY/ VIOLENT/ DISABLED
This is a myth that has seeped into society. People with epilepsy have no greater tendency for aggressive behavior than do other people. In some kinds of epilepsy, individuals can be disoriented, scream, act and speak in a strange manner, or appear combative and confused during or after a seizure. Unfortunately, there have been cases where police officials have been unable to recognize these symptoms as a seizure, and this has led to grave consequences.

People with epilepsy are not mentally disabled; in fact, they can fare quite well in their academic and professional careers. Musician Neil Young, author Agatha Christie and President Theodore Roosevelt have had epilepsy and they went on to have successful careers. Hence, epilepsy is not a barrier to success.

MYTH #2 - IF I SEE SOMEONE HAVING A SEIZURE, I SHOULD PUT SOMETHING IN HIS/HER MOUTH 
This myth can be very dangerous. There have been reports that people have tried to put a spoon in the mouth of someone who is seizing in an attempt to prevent the person swallowing his/her tongue. This has led to broken teeth and injured tongue and jaw. Also, there is a danger of choking if the object that is put into the person’s mouth breaks off.

This is the necessary first-aid for seizures

  • Keep calm
  • Help prevent injury by removing sharp objects around the person, and by putting something soft and flat under the person’s head. Remove eyeglasses and loosen ties.
  • Time the seizure! Call 911 in the following situations - if the seizure continues for more than five minutes, if the person has been injured or is in pain, or if the individual is pregnant.
  • Do not hold the person down or try to stop his/her movements.
  • Do not place anything in the person’s mouth, as this can cause injury to the jaw, teeth or tongue.
  • Turn the person gently to one side to keep airway clear.
  • Stay with the person and reassure him/her once the seizure is over

MYTH #3 - PEOPLE DON’T DIE FROM EPILEPSY
Although people with epilepsy can lead perfectly normal lives, SUDEP can be a real concern. SUDEP stands for Sudden Unexpected Death from Epilepsy, and a prolonged seizure (called ‘status epilepticus’ can lead to death. The ways to prevent SUDEP are by taking the anti-epileptic medications regularly, getting enough sleep and refraining from drugs and alcohol. With ongoing FACES research, we hope to understand the causes of SUDEP and ways of preventing it.

MYTH #4 - PEOPLE WITH EPILEPSY ARE ‘EPILEPTICS’
Calling a person who has epilepsy as an ‘epileptic’ refers to a person by the disorder or a problem, and adds to the stigma that these individuals already face. Labels such as these can be very powerful, and can perpetuate myths about epilepsy and seizures. The correct way to address individuals with epilepsy is ‘person with epilepsy’.

MYTH #5 - SEIZURES AND EPILEPSY ARE THE SAME THING
A seizure is an episode where there is abnormal, excessive or synchronous activity in the brain. The physical manifestation of seizures can be a grand-mal seizure (wild, thrashing movement known as a tonic-clonic seizure) or brief loss of awareness (known as absence seizure). Epilepsy is when the individual has had two or more seizures that have been spontaneous and unprovoked (‘out of the blue’). Hence, for example, if a person has a seizure because of a drug overdose, that will not be considered as epilepsy as the episode was provoked by the drug.

MYTH #6 - EPILEPSY ALWAYS CAUSES BRAIN DAMAGE
‘Brain damage’ implies that something is permanently wrong with the structure of the brain. There are some conditions like severe head injury and stroke, where seizures are seen in conjunction with brain damage. However, this is not always the case. Generally speaking, single short seizures (lasting less than 5-10 min) do not cause brain damage, although cumulative seizures or longer ones can. Hence, it is important to consider that there is considerable variability between individuals as far as causes and symptoms of epilepsy.

MYTH #7 - EPILEPSY IS ALWAYS INHERITED
Some cases of epilepsy can be inherited i.e. the cause is genetic. However, the vast majority of cases are not genetic – in these cases, epilepsy can be caused by infections such as meningitis or brain trauma. For many people, the cause of their epilepsy is still unknown.

MYTH #8 - EPILEPSY IS A CURSE
Just like asthma, diabetes and high blood pressure, epilepsy is a medical condition, and has nothing to do with demons, supernatural powers or punishment for past sins.

MYTH #9 - EPILEPSY IS CONTAGIOUS
Witnessing a seizure can be a frightening experience, and there have been reports that people fear they will become ‘contaminated’ if they touch the person who is seizing. This is absolutely not true - epilepsy is caused by abnormal firing of neurons, and touching someone who has epilepsy cannot transmit epilepsy.

MYTH #10 - SINCE FEW PEOPLE SUFFER FROM EPILEPSY, IT IS NOT SOMETHING I NEED TO WORRY ABOUT
This is just not true! It is estimated that 1 in 26 people in the US have epilepsy. This is more than autism, Parkinson’s disease, multiple sclerosis and cerebral palsy ---combined!

MYTH#11 - EPILEPSY IS A SOLVED PROBLEM
Approximately two-third of people with epilepsy can be helped by drugs known as anti-epileptic drugs (AEDs). However, these medications can have a number of side effects. Also, these drugs provide symptomatic relief, but do not address the underlying problem. There are a significant number of patients who do not respond to medications and continue to have seizures. Researchers are working very hard to develop newer and better strategies to help these people, but we are not there yet. This is why epilepsy research is extremely important!

MYTH #12-ONLY KIDS GET EPILEPSY
One can suffer from epilepsy at any age. The elderly population can be at a greater risk of epilepsy, possibly because of other conditions like strokes and a greater likelihood of falls.

HOW CAN ONE DISPEL THESE MYTHS?

It is clear that there are a number of myths about epilepsy. Fortunately, there is a way to dispel them: the only way to get rid of these myths is by educating patients, caregivers and the general public. NYU FACES works tirelessly for epilepsy advocacy. The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures. FACES funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy.

Sloka S. Iyengar, PhD is an epilepsy researcher, and is interested in the basic mechanisms that can cause groups of neurons to generate and sustain seizures. After a Bachelor’s degree in pharmacy in Ahmedabad, India, Sloka attended University of South Carolina School of Medicine for her graduate work, where under the mentorship of Dr. David Mott, she used electrophysiology to study epileptic circuits in experimental rats. She is now at the Nathan Kline Institute, New York, where she is examining how postnatal neurogenesis in the hippocampus can affect seizures and epilepsy in the lab of Dr. Helen Scharfman. In addition to epilepsy research, she also has a strong interest in epilepsy advocacy and education.


7) BRAIN AWARENESS WEEK

By: Rachel Jurd, PhD

This week (March 10-16) is Brain Awareness Week (BAW). Activities, events and workshops for people of all ages are being held around the globe in an effort to increase public awareness of the progress and benefits of brain research.

Events happening in New York City as part of BAW include:

  • NYU Langone Community Brain Fair (March 12, NYU Langone Medical Center)
    • Participate in hands-on activities, see real brains, learn about brain diseases and neuroscience research at NYU Langone (2-5pm).
    • Visit the Epilepsy Booth where you can find out more information about FACES programs and epilepsy research and talk with researchers from the Comprehensive Epilepsy Center and Nathan Kline Institute (2-5pm).
    • Attend the "Staying Sharp" symposium where experts from the Center on Brain Aging discuss memory, brain health issues and keeping your brain young (2-4pm)
    • Attend the lecture "Enhancing Memory: Fact or Fiction?" where Dr. William Barr, Director of Neuropsychology at the Comprehensive Epilepsy Center, will discuss brain training games and other memory treatments in practice and in the news (5-6pm).
  • ADHD and Children (March 13, 6:30-8pm). A workshop that explains what a neuropsychological assessment is and how it can be used to better understand your child for treatment and school planning purposes.
  • The Brain in Art and Science (March 13, 7-8:30pm). A panel discussion between neuroscientists and artists about perception and consciousness at the intersection of science and art.
  • Biobase (March 14, 3-7pm). A series of hands-on learning stations that emphasize experimentation and incorporate scientific equipment such as microscopes and model organisms. Neuroscience videos and lectures on brain-related topics will also be held.

Not in New York City? Click here for events in your town

FACES is pleased to accept applications for the 2014 College Scholarship Program. FACES will provide financial support for the education of incoming freshmen or currently enrolled college students affected by epilepsy and seizure disorders. We are seeking to recognize the personal accomplishments of those living with epilepsy during their college journey. Awarded scholarship amounts will vary depending on the applicant’s financial need. Awards are to be used at a United States based institution for higher education.

THE DEADLINE TO APPLY IS JUNE 9, 2014

If you have any questions or would like for information about the program, please email FACESscholarship@nyumc.org or call Heather Wall, the Scholarship Coordinator, at 646.558.0839. Your message will be returned within 48 hours.

We are excited to launch the Dr. Blanca Vazquez Summer Camp Scholarship Program.

The deadline to apply is May 2, 2014

PLEASE CLICK HERE TO LEARN MORE

A portion of this scholarship program has been funded by


THE FACESforward campaign is in full swing!


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STAY TUNED FOR OUR FUTURE PEACE OF MIND LECTURE DATES
PLEASE CLICK HERE TO VISIT THE PEACE OF MIND LECTURE PAGE


The FACES PET RELATIONSHIP PROJECT is made possible by a generous grant from Amie's Place Foundation.