May 2014

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MAY 2014 FACES E-NEWSLETTER

  1. CEC SPOTLIGHT: JULIE HEDLUND, BSN
  2. RECIPE OF THE MONTH
  3. FACES NOTEWORTHY PRESS
  4. LETTERS OF HOPE: MICHAEL’S STORY
  5. TEMPORAL LOBE EPILEPSY- AN INTRODUCTION
  6. NEUROSCIENCE RETREAT RECAP 2014
  7. FUNDRAISING CORNER: A FACES CLUB STORY

1) CEC SPOTLIGHT: JULIE HEDLUND, BSN

From an early age, Julie Hedlund, BSN, a Research Nurse Coordinator at NYU Comprehensive Epilepsy Center, expressed a strong desire to help the sick, later following her passion by accompanying doctors on many trips to treat indigent patients in countries like Brazil, Ecuador and Cote d'Ivoire (Ivory Coast).

After earning her B.S. in biology in 2009 from Palm Beach Atlantic University in West Palm Beach, Florida, Julie pursued a degree in nursing, receiving her B.S.N. at New York University in 2011. After working at NYU Langone Medical Center in an inpatient neurology rehabilitation unit at Rusk, she changed course and transferred to NYU Comprehensive Epilepsy Center to pursue research in neurology and epilepsy.

Currently, Julie has focused her attention on many of Dr. Devinsky's research studies, areas of which have included autism and epilepsy, cannabidiol treatment for drug-resistant epilepsies, everolimus treatment for tuberous sclerosis, and focal cortical dysplasia. Because nothing gives her more joy than caring for patients and seeing a new treatment succeed in limiting a patient's seizures, this compassionate professional continues to seek to be the best she can be. Julie is working to complete her master's degree at New York University and is projected to graduate in May 2015 as a family nurse practitioner.


2) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

This month’s recipe features a healthy turkey quinoa meatball recipe. You can make a large batch of meatballs ahead of time, freeze them, and take them out as needed. Quinoa is a great replacement for breadcrumbs. It is an ancient grain that is packed with nutrition. It has 20 percent more protein than other whole grains and it contains vitamins A, E and B, calcium, potassium, magnesium and iron. This recipe is also very low in sodium – coming in at only 36mg per serving; without sacrificing flavor. Controlling sodium intake is important for overall health. Too much sodium causes water retention (bloating), puts stress on your arteries and veins, and increases blood pressure.

May is national high blood pressure education and stroke awareness month, so this is the perfect time to put the spotlight on your sodium intake. Controlling blood pressure is an important part of maintaining your health and neurological well-being.

One in three adults has high blood pressure. High blood pressure can damage the heart, brain, and kidneys without symptoms. Making lifestyle changes such as maintaining a healthy weight, staying physically active and consuming a healthy diet that is low in sodium can all reduce blood pressure.

TURKEY QUINOA MEATBALLS
By: Michele Angel

Yield: Serves 4

Nutrition for whole recipe: 653 kcals, 14g fat. 28.2g carb. 146mg sodium

Nutrition per serving: 163 kcals, 3.5g fat, 7g carb, and 36.5mg sodium

INGREDIENTS:

1 pound lean ground turkey (85% lean)
2/3 cup cooked quinoa
2 garlic cloves, minced
1 egg
¼ cup diced red onion
¼ cup arugula or parsley
½ teaspoon of Italian or dash seasoning
sea salt and pepper to taste

* Optional: Prepare 4 cups of arugula with fresh lemon, olive oil.

DIRECTIONS:

Preheat oven to 350F. In a large bowl add turkey, quinoa, onions, parsley, seasoning, egg, salt and pepper to taste. Roll into 1 to 1 ½ inch balls. Add to a prepared backing sheet with cooking spray. Bake for about 30 minutes. Serve over a lightly dressed bed of arugula or any vegetable of your liking.


3) FACES NOTEWORTHY PRESS

Top 10 National Press Articles

  1. NEW CLINICAL DEFINITION FOR EPILEPSY PROMISES TO IMPROVE TREATMENT
  2. EPILEPSY TREATMENT USES LASER TO STOP SEIZURES
  3. KENT EPILEPSY RESPONSE CHILDREN PRAISED
  4. ONE SCIENTIST'S QUEST TO VANQUISH EPILEPTIC SEIZURES
  5. WISCONSIN LEGALIZES MARIJUANA OIL TO TREAT SEVERE CHILDHOOD SEIZURES
  6. THE EPILEPSY-AUTISM LINK: A BRAIN MISFIRE THAT CAUSES SOCIAL CHALLENGES
  7. IF YOU HAVE EPILEPSY, DON’T OVERDO ALCOHOL
  8. HOW MEDICAL MARIJUANA IS HELPING CALIFORNIA CHILDREN WITH EPILEPSY
  9. PARENTS OF EPILEPTIC CHILDREN MEET WITH BRANSTAD TO TALK ABOUT MEDICAL CANNABIS
  10. HEAD OF EPILEPSY FOUNDATION WANTS MARIJUANA OIL AVAILABLE

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

MICHAEL’S STORY

From the time I was first diagnosed with epilepsy at age 10, my seizure events were few and far between--and managed well by medication. A patient of Dr. Orrin Devinsky since the age of 17, I took my prescribed medications and lived a normal life, obtaining my driver's license, graduating from college and keeping a steady job.

Around the age of 27 I began to suffer frequent auras, followed by a brief period during which I had no memory. As per Dr. Devinsky's advice, I agreed--for everyone's safety--that I would not drive. This was extremely difficult for me, as it meant giving up my independence and relying on others for transportation.

Fortunately, Dr. Devinsky, a kind and compassionate man, never let me give up hope that my seizures could be controlled. Entered into a study of new epilepsy medication at New York University Langone Medical Center, I met the director of the study, Maria Hopkins, RN, a caring individual who has remained interested in my progress. My goal was to be seizure-free for six months so that I could resume driving. Unfortunately, the medication would work until I had another event--always before the six-month time frame.

After I had been on the new medication for about a year without the desired results, Dr. Devinsky suggested that I might be a good candidate for surgery to remove the damaged brain tissue that contributed to my seizure activity. The surgery presented minimal risk and side effects. After undergoing medical tests and a review of my case, it was decided that I was a good candidate and I put myself in the hands of Dr. Werner Doyle and his team at NYU. Dr. Doyle met with me and my family to discuss the different phases of the surgery. He was so kind and patient, answering all of our questions and putting us at ease. I left his office feeling confident and fortunate to have a surgeon who was not only the best in his field, but was also a caring, thoughtful person.

I was asked to be part of a research study using the Utah array. Researchers would follow my progress after my surgery, interview me and have me complete tests designed to gather information on the workings of the brain. I also agreed to donate a small sample of the tissue removed from my brain for further research, in hopes of helping others in the future. Members of the research team were friendly and professional; I welcomed their company during my hospital stay.

I underwent my first surgery on February 25, 2014; I had my second on March 6, 2014. I am now four weeks post op and my doctors are pleased with my recovery. My goals--realistic, according to my doctors--are to return to my job as soon as possible and resume driving.

This has been an enlightening and life altering experience for me and I owe a HUGE debt of gratitude to my neurologist, Dr. Devinsky, and my surgeon, Dr. Doyle, and their respective teams.


5) TEMPORAL LOBE EPILEPSY - AN INTRODUCTION

By: Sloka Iyengar, PhD

WHAT IS TEMPORAL LOBE EPILEPSY?

Temporal lobe in the human brain www.brainline.org

Epilepsy is a neurological condition characterized by spontaneous, recurrent seizures affecting approximately 1% of the population worldwide. Temporal lobe epilepsy (TLE) is a type of epilepsy wherein seizures originate from the temporal lobe of the brain. In general, seizures can be classified into partial and generalized – partial seizures involve one hemisphere of the brain, whereas generalized seizures involve the entire brain. Seizures in TLE are partial in nature.

WHAT ARE THE CAUSES OF TEMPORAL LOBE EPILEPSY?

TLE can be caused by traumatic brain injury, stroke, tumors, and infections like meningitis. Even so, not everyone who has had a traumatic brain injury develops epilepsy. Although it is controversial and not well understood, some studies show that children that have febrile seizures (seizures triggered by fever) have a higher likelihood of developing TLE later in life.

HOW IS TEMPORAL LOBE EPILEPSY DIAGNOSED?

The most common diagnostic test for TLE is by recording the electrical activity of neurons by electroencephalography (EEG). Techniques like Magnetic Resonance Imaging (MRI) and Computed Tomography (CT) scans are used to find out whether the epilepsy is caused by structural abnormalities like brain tumors or cysts. Other tests that measure behavior, memory and intellectual capability may be done to find out how the epilepsy is affecting the person’s function.

HOW IS TEMPORAL LOBE EPILEPSY TREATED?

The mainstay of TLE treatment are drugs called anti-epileptic drugs (AEDs). Most of these drugs act by decreasing excitation of neurons. There are other medications that work on ion channels as well – by controlling the entry of ions into and out of neurons; these drugs ultimately affect excitability of the brain. AEDs work favorably in two-thirds of subjects with epilepsy, but the people with epilepsy that are refractory to drugs may have to undergo brain surgery. Newer treatment modalities include brain stimulation and dietary interventions like the ketogenic diet.

COMORBIDITES IN TEMPORAL LOBE EPILEPSY

People with epilepsy can lead completely normal lives; in fact a number people with epilepsy have achieved extraordinary heights e.g. authors Dostoevsky and Leo Tolstoy, Julius Caesar and Napoleon Bonaparte. However, epilepsy, and especially TLE can be associated with a number of accompanying psychiatric conditions, or comorbidites. The common comorbidites observed in TLE are depression, anxiety, psychosis, memory disturbances and personality disorders.

WHAT RESEARCH IS CURRENTLY BEING DONE FOR TEMPORAL LOBE EPILEPSY?

A number of model organisms are used by researchers to understand mechanisms of seizure generation and propagation. Rodents like rats and mice, and even sea-lions have been used to simulate epilepsy to understand what makes the brains of epileptic subjects different from non-epileptic ones. Another novel tool that researchers use is zebrafish – these tiny organisms provide a perfect screening tool to develop thousands of anti-epileptic drugs with relative ease.

An area of active research is finding biomarkers for TLE. A ‘biomarker’ (or a biological marker) is something that can be objectively measured, and can act as an indicator of a physiological or a pathological condition. For example, prostate specific antigen (PSA) is an enzyme that is normally present in the healthy prostate, but its levels are elevated in prostate cancer, serving as a useful biomarker. As mentioned above, there is no way of predicting what makes some individuals susceptible to seizures after an injury. If we had a biomarker, we could provide extra medical care to susceptible individuals and prevent spontaneous seizures. At present, anti-epileptic therapy is trial-and-error; if we found a biomarker, therapy could be more targeted and rational.


6) NEUROSCIENCE RETREAT RECAP 2014

By: Sloka Iyengar, PhD

Mohonk Mountain Resort

Each year, NYU hosts a Neuroscience Retreat at the beautiful Mohonk Mountain resort in upstate New York; this retreat is a unique opportunity for faculty, students and postdoctoral fellows from the NYU campuses and the Nathan Kline Institute to learn about their colleagues’ research in a peaceful and inspiring setting. The Neuroscience Retreat 2014 was held from April 10 to April 12 and saw more than 200 eager participants. There were sessions related to sleep, memory and decision-making, where NYU faculty shared data from recent experiments. Postdoctoral fellows were given an opportunity to give short talks; in addition, poster sessions gave participants an informal and relaxed platform to share latest scientific findings.

 

Neuroscience Retreat Lecture

Dr. Anli Liu from the NYU Comprehensive Epilepsy Center was one of the speakers at the Neuroscience Retreat; her talk entitled ‘Tuning Cortical Oscillations in Sleep’ was extremely well received by the audience. The recipient of numerous accolades, Dr. Liu is actively involved in epilepsy research in addition to treating subjects with epilepsy. People with epilepsy can suffer from cognitive dysfunction, and Dr. Liu’s main research interest lies in understanding what neuronal networks are involved in memory processing in people with epilepsy. Her ultimate goal is to devise methods to improve memory in subjects with epilepsy and other neurological disorders. At the neuroscience meeting, Dr. Liu talked about studies that show that sleep plays a very vital role in memory consolidation. She also talked about transcranial electrical stimulation (TES), and emerging studies in experimental rodents that suggest a role for TES in increasing learning performance. Subjects with epilepsy may have memory dysfunction for a variety of reasons – e.g. seizures during sleep, the presence of spikes and the effect of anti-epileptic drugs on memory function. Although there’s a lot we don’t yet know, Dr. Liu’s talk shed light on the possible mechanisms of memory dysfunction in people with epilepsy, and potential ways to manage it.

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) FUNDRAISING CORNER: A FACES CLUB STORY

By: Brady Olcott and Caroline Sayre

CO PRESIDENTS OF THE CLUB,
BRADY OLCOTT& CAROLINE
SAYRE

When Summit High School's FACES Club hosted a flywheel spin class on April 6, 2014, the event not only raised $1,800, but it also raised awareness about epilepsy and seizure disorders. Drawing more than 40 supporters, the class was a huge success! Participants included club members, friends and teachers--and Dr. Devinsky, who showed his support and happened to maintain the highest speed record during the class.

SHS's FACES Club was founded by my older sister, Marion Sayre, and her friend Jen when I (Caroline Sayre) was diagnosed with epilepsy in middle school. In addition to showing support, the goal was to raise money that would go toward research in finding a cure for epilepsy. After Marion and Jen graduated, Brady Olcott and I continued to run the club.

FACES CLUB SPIN PARTICIPANTS

Over the past three years, events have been incredibly successful, raising about $7,000. In addition to having run three jewelry sales, many bake sales, and the recent flywheel class, we are planning to have a cooking class and a yoga class. At all of the events, we hand out literature about epilepsy to educate people and explain how their money will be used. We look forward to continuing success in our senior year and we hope to raise more awareness.

Please feel free to visit our FACES Club fundraiser website. If you would like to set up a FACES club at your school, please click here or call the FACES office at 646-558-0900


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 or graduate 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.

THE DEADLINE TO APPLY IS JUNE 9, 2014

Previous FACES College Scholarship recipients are not eligible to apply.

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.


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


SAVE THE DATE: 6/9/2014

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