March 2016

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MARCH 2016 FACES E-NEWSLETTER

  1. FACES GALA
  2. RECIPE OF THE MONTH
  3. ANTIEPILEPTIC MEDICATION DISCONTINUATION AFTER SUCCESSFUL EPILEPSY SURGERY
  4. FRANK’S STORY
  5. THE LINK BETWEEN EPILEPSY AND DEPRESSION
  6. DEAR ROSIE
  7. NOTEWORTHY NEWS

1) FACES GALA

Dr. Orrin Devinsky, Gala Chair Harrison
Ford, and 2016 FACES Honoree
Laura Crandall.

On the evening of March 7, 2016, more than 830 guests attended NYU Langone Medical Center’s annual Finding A Cure for Epilepsy and Seizures (FACES) Gala, held at Pier Sixty at Manhattan’s Chelsea Piers. Over $5 million was raised at the event to support epilepsy research and the advancement of new therapies at NYU Langone. Hosting the event as Gala Chair was Harrison Ford, actor and producer.

Matt Stone, Angela Howard, Dr. Orrin
Devinsky and Georgia Ford

“Tonight is an opportunity to celebrate the people who make NYU Langone’s Comprehensive Epilepsy Center the enormously successful, patient-centered place it is,” said Robert I. Grossman, MD, the Saul J. Farber Dean and CEO of NYU Langone, in his opening remarks.

 

Georgia Ford

Proceeds from FACES events are used to support several research projects including the Epilepsy Diet Program and the Human Epilepsy Project that investigates why some people have a few seizures that are easily controlled with medications while others have many seizures that defy the best therapies.

Also of note was the annual live auction conducted by C. Hugh Hildesley, executive vice president of senior business development at Sotheby’s. Popular prizes included a helicopter ride and lunch with Harrison Ford, a private yacht getaway, and a Napa Valley Reserve year-long membership.

Mr. Ford chaired this year’s gala in recognition of Orrin Devinsky, MD, who helped a family member overcome epilepsy. Mr. Ford has supported FACES for epilepsy research for a decade. “Nine years ago my daughter was admitted to NYU Langone to be treated for epilepsy, and she has not had a seizure since the day she left," Mr. Ford said. "My family and I are grateful for Dr. Devinsky’s help and all the support that FACES provides for those who suffer from epilepsy and seizures.”

Leah and Michael Weisberg

Dr. Devinsky, founder of FACES and director of the Comprehensive Epilepsy Center at NYU Langone, thanked all in attendance, noting that FACES was instrumental in supporting the early stages of a research project that eventually became the largest study of epilepsy patients ever conducted. “The connections that you have allowed us to create are breathtaking,” said Dr. Devinsky. “We hope that these efforts will inspire new ways to study and treat epilepsy.”

 

Randi and Jeff Levine

Laura Gould Crandall, MA, research scientist, Department of Neurology and co-investigator of the Sudden Unexplained Death in Childhood (SUDC) Registry and Research Collaborative at NYU Langone, was honored for her studies on Sudden Unexplained Death in Epilepsy (SUDEP). In 2014 Ms. Crandall partnered with Dr. Devinsky to better understand and prevent sudden unexplained death in children and to provide for a more thorough study of the issue than previously possible.

Special guests in attendance included Katie and Todd Boehly, Susan Block Casdin, Miss Universe Slovenia Anna Halozan, auction co-chairs Melisa and Josh Fluhr, Georgia Ford, Angela and Matt Stone, and FACES Gala underwriters Leah and Michael Weisberg.

FACES GALA IN THE NEWS LINKS:

  1. Huffington Post
  2. People Magazine
  3. Weekly US
  4. Eonline
  5. NY Daily News

2) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

BLUEBERRY MACADAMIA NUT WAFFLES OR PANCAKES
1 serving, 5:1 Ratio, 303 Calories, 8.13g Protein, 3.27g Carbohydrate

Ingredients:

  • 51g raw egg, mixed well
  • 21g macadamia nuts, ground into butter
  • 8g coconut oil, melted
  • 20g frozen blueberries, unsweetened
  • 3 drops liquid stevia, a pinch of salt (optional)

Directions:

Pre-heat a waffle iron or non-stick pan. Combine the egg, macadamia nuts and coconut oil, stir until very well combined. Add the frozen blueberries and optional ingredients to the macadamia nut batter. Stir to evenly distribute the blueberries. Pour the batter into a waffle iron, filling each mold about ¾ of the way full. For pancakes, use a tablespoon to pour small pancakes onto a non-stick pan. Make sure to scrape all the batter out of the mixing bowl. For waffles, cook until the steam begins to slow down, ignore any indication lights or alarms! For pancakes, cook the first side until the edges begin to look dry, flip and cook the second side until cooked through and slightly browned. Serve immediately or freeze in plastic wrap.

This recipe has been provided from The Charlie Foundation

Be sure to check this recipe and consult with your dietitian for any modifications. Ketogenic diets are highly individualized treatments and this recipe should only be used as a guide.

3) ANTIEPILEPTIC MEDICATION DISCONTINUATION AFTER SUCCESSFUL EPILEPSY SURGERY

By: Steven V. Pacia, MD
Associate Professor of Neurology, NYU School of Medicine

Tapering or discontinuing antiepileptic medications in anyone with a seizure disorder is difficult and anxiety provoking for patients and physicians. Following the extensive diagnostic evaluations and prolonged hospitalizations necessary for successful epilepsy surgery, patients desire a life without medication side effects, blood tests and physician visits. Unfortunately, creating guidelines for antiepileptic medication discontinuation following epilepsy surgery is inherently difficult. Some surgeries are “more complete” than others, often because seizure producing regions overlap with important brain functions, like language or motor areas. Also, many causes of epilepsy, like head trauma and tuberous sclerosis, give rise to multiple seizure producing brain regions, some amenable to surgery and others still requiring medication for seizure control. As a result, blanket recommendations for antiepileptic medication discontinuation are difficult to apply to all patients.

In a 2012 survey of Canadian epileptologists, the most important factors influencing the decision to withdraw seizure medications after surgery were negative EEG, patient preference, and a single temporal lobe abnormality on MRI. Conversely, physicians continued medications when patients had abnormal EEGs, persistent auras, the possibility of more than one seizure producing brain region on preoperative EEG, or wanted to drive. In the same survey, most physicians required a seizure free period after surgery of greater than one year before contemplating medication reduction. Many neurologists prefer to wait two years, a practice based largely on evidence from past non-surgical epilepsy studies. Regardless, seizures following medication cessation occur most often in the first 6 months, and although the risk diminishes over time, it never disappears completely.

While tapering antiepileptic medications can result in seizures, with a risk of injury, as well as repercussions like lost driving privileges, many neurologists, and their patients, fear that once seizures return they may no longer respond to medications. Studies conflict regarding the magnitude of the risk, although most agree that it is small. The vast majority of patients will return to full control after medications are restarted. Therefore, the fear of inducing new medically refractory seizures should not be the primary reason to avoid tapering medication when appropriate.

Clearly, properly evaluated and well selected patients can achieve complete seizure freedom with epilepsy surgery and many go on to reduce or discontinue antiepileptic medications successfully. However, until more information is gathered about which patients are at greatest risk for seizure recurrence, discontinuing medication after epilepsy surgery continues to be a difficult decision that must be carefully individualized and cautiously carried out.

4) REMOVING THE MASKS OF EPILEPSY

By: Frank Harrison

My name is Frank Harrison. I was first diagnosed with epilepsy in 1984 when I was 16 years old. I was a great student, excited about college, looking forward to a fulfilling career and even a family. But once I got that diagnosis, my life, and the way people perceived me changed. I was labeled as someone weird or different. These perceptions degraded my sense of belonging and convinced me that my dreams for the future would never be realized.

When I was first diagnosed, there were only two toxic drugs on the market. Neither of them guaranteed complete seizure control. They both also required that you live a life that’s “stress free with lots of rest.” REALLY?! Even then, before the internet and cell phones, that was close to impossible. I went from feeling excited about the future to a feeling of hopelessness and depression.

A technique I used to help me survive and gain some measure of control was to wear “masks.” I wore the mask of a professional, student, uncle, brother, son and patient. When I refer to masks, I don’t mean a façade but rather a character that I played depending on who I was with. I found it difficult to maintain a consistent demeanor since I had to work so hard to keep in control during social interactions. This is why many people with epilepsy become disconnected since keeping that control is such a chore, plus this reduces the risk of having a seizure in public and being ridiculed.

For the 1% of the population with epilepsy, it’s more than a disorder – it’s a way of life. We’re seen as epileptic and not as a person anymore. So we come up with coping techniques, like putting on a mask and trying to blend in. We live in fear of the next seizure. Some of us keep our condition a secret, hoping that will prevent us from dealing with the social stigmas and burdens of trying to fit into society.

One of the most difficult masks for me to put on was that of a professional. There are so many social pressures in an office, whether it’s trying to fit in or be seen as a valuable employee. I was reticent to tell my colleagues that I was an epileptic, since that provided the ammunition for them to judge me without even knowing me. I’ve heard of epileptics being passed up for promotions and raises, and they are often the first to be laid off if there’s downsizing. All of this has an impact on your sense of self, sometimes leading to behaviors that are perceived by others as deceitful or hateful. When all we want is to be seen as “normal.”

In the 32 years since my first seizure, I have worked hard to succeed. I graduated from NYU, had a successful career at major corporations and earned two Masters degrees. One of those degrees was in Psychology. My thesis focused on the relationship between Epilepsy and Mental Health. This “lifestyle” has a psychological impact either in the form of depression or anxiety. There are some deeper psychosocial issues but in most cases depression is the biggest effect. I don’t mention it often, since it’s enough to be labeled as an epileptic, but I have also been diagnosed with Major Depressive Disorder. My brain functioning and social issues are what cause this disorder. Epilepsy is the gift that keeps giving!

Though I still have my days where it takes every ounce of energy to get out of bed, I am determined to get out from under this condition by helping others. The goal is to help make a difference using my unique experiences and education. I think I can help those struggling with epilepsy and other health care issue that severely impact the quality of life. Instead of being defined by a disease, and having to hide behind a mask of normalcy, I want people to be able to be themselves and thrive. I’d also like to educate those who are “normal,” who may not understand the significant impact that epilepsy and other conditions have on the quality of life. I want to remove the mask of uncertainty and just be me. Not the guy with epilepsy.

Frank R. Harrison is a seasoned executive who has worked for corporations spanning the Financial Services, Entertainment and New Media industries. He’s a graduate of the NYU Stern School of Business, earned his MBA from Fordham University’s Graduate School of Business and returned to NYU to earn his Master of Arts degree in Psychology and his MS in Integrated Marketing. Connect with him on Twitter @frankhealthcare or at frh2001@stern.nyu.edu

5) THE LINK BETWEEN EPILEPSY AND DEPRESSION

By: Sloka Iyengar, PhD.

The phenomenon that people with epilepsy are more prone to depression was observed a very long time ago. Depression in people with epilepsy can be profoundly debilitating, perhaps even more than the seizures themselves which is why it is a topic of intense research. What lies behind this close relationship between depression and epilepsy?

As one might imagine, there could be social or economic factors at play e.g. the uncertainty involved with having seizures could play a part, or the stress of having to deal with financial consequences of epilepsy. But could there be neurobiological reasons at play too? The way scientists study this in the lab is by doing experiments on rats and mice. An advantage of using experimental rodents is that it makes it feasible to follow the time-course of evolution of epilepsy and depression and study possible neurobiological mechanisms without confounding variables such as social or financial status. A characteristic of depression can be anhedonia or an inability to feel pleasure. This can be studied in the laboratory by giving rodents access to tap water and saccharine solution. Normally, rodents show a strong preference to saccharine solution, but those that had experimental depression show a greater preference for the tap water, or an equal preference towards tap water and saccharine solution.

What parts of the brain and what neurotransmitters might be involved in this unique link between epilepsy and depression? The hypothalamo-pituitary-adrenocortical (HPA) axis affects release of a neurotransmitter known as serotonin in subjects with epilepsy to produce symptoms of depression. Another possible mechanism that links epilepsy and depression is inflammation which can separately affect serotonin as well.

A major challenge in this field is that both depression and epilepsy are extremely complicated disorders that we don’t completely understand. Certainly, how these disorders intersect needs to be studied in much greater detail, and experimental animals provide us with a good tool to do so.

As a basic epilepsy researcher, Sloka S. Iyengar, PhD used animal models of epilepsy to understand what makes the epileptic brain susceptible to seizures and comorbidities. Currently, as a clinical epilepsy researcher at the Northeast Regional Epilepsy Group, she conducts clinical trials for people with epilepsy. She is also a science writer and advocate.

 

6) DEAR ROSIE

I’m afraid of having a seizure around my friends and I’m worried they won’t want to hang out with me if this happens. Do you have any advice on how to talk to my friends about my epilepsy?

Opening up to friends and family outside the circle of people who already know about your epilepsy can be challenging. I personally have had occasional struggles with it and can relate to this sense of fear and hesitation.

In an attempt to provide the best advice possible, I have reached out to friends of mine that also have epilepsy and dealt with the same grapple of opening up to others.

So the first step to take is finding your own comfort with your epilepsy. Yes, it is unfortunate that we have been dealt this hand of cards, but there is more to us than our episodes. As one friend mentioned, “if you are okay with it, the people you tell will be okay with it”. Often people who are unfamiliar with epilepsy are going to take a hint of how to react depending on how the news is delivered.

It is also normal to go through various stages of what you are open to share. How you talk to others about it now might not be how you open up about it later on, and that's okay. Sometimes I will tell someone new in my life in a brief, casual few sentences. Other times I sit people down and have an extended heart to heart talk about details. Again- either way is fine as long as you are comfortable and confident in yourself.

Once opening up, be prepared for some questions. Here are some likely examples: What do your seizures look like? What should I do if you have one? Do I need to call an ambulance? People ask so they can react properly and know what to be aware of. It is common for people who have the seizures to not know exactly what they look like. My parents, friends and co-workers who have seen my seizures were able to tell me what happens, including my aura signals and then regular attempts at conversation after an episode but before being fully back in control of my brain. It’s best to have that figured out so you can fully describe it to others.

Finally, as anyone with epilepsy can relate, it’s not always easy to open up, but once you start to do it more often, it becomes just another tidbit of information about yourself. It feels like an accomplishment when I talk about my epilepsy as freely as I spout about my preference for bluegrass music and love of macaroni and cheese.

For a recent example; Not too long ago I had my first EEG check-in since moving to the city. This is when wires are glued all over your scalp and your head gets covered in gauze and tape and then attached to a big portable battery. It was a three day ‘out of hospital’ EEG so I had to find a place to settle indoors for 72 hours. I debated whether I should stay at my new apartment in Brooklyn with 5 other roommates or hop on the train and head up to the country to be a recluse at my parents’ place. I had already told my roommates about my seizures, which made me feel like a confident champion of embracing my epilepsy. Now the curveball of an EEG at home threw me back down into the familiar sense of being worried of what others’ will think. My epilepsy couldn’t be hidden when my head looks mummified and tail of multicolored wires are dangling down my back. Yet, I decided to stay in the city and gave my roommates the intel about my need to be fortressed up in the house all weekend. I was quite nervous when I finally walked into the living room of my apartment with the wires on, expecting to see dramatic looks of shock on my roommates faces. It became apparent in seconds that it wasn’t a big deal. So I caught my breath and jumped in the conversation seamlessly. The assumption of an uncomfortable reaction was just that, a misguided assumption again.

So overall, we do not need to be worried that people will not want to hang out if we tell them about ourselves. While it can be challenging, it is much better than hiding our reality, especially in the case of looking out for ourselves. I’ll leave you with one of my favorite famous quotes these days “Don't change so people will like you. Be yourself and the right people will love the real you”.

‘Dear Rosie’ is a monthly contributor to our newsletter. She is interested in hearing from the community and would be happy to answer any non-medical related questions that you may have. Email facesinfo@nyumc.org with your questions or suggestions.

7) NOTEWORTHY NEWS

Top 10 National Press Articles

  1. Seven Ways to Fall Asleep Without Ambien
  2. Fatty Super Bowl Snacks Diets Helped Save an Epileptic Boy’s Life
  3. Epilepsy Deaths Have Health Officials Worried
  4. Sleep Study
  5. Next Level Living’: What’s Really Happening When We Sleep
  6. Epilepsy Specialists Say Night Milk Offers Hope for Better Sleep
  7. Understanding Sudden Unexpected Death in Epilepsy: How Can the Risk Be Minimized?
  8. No, "Organic" Snacks Are No Healthier for You
  9. New York's Medical Marijuana Industry is Lighting Up Slowly
  10. Study: One in Three Adults Lack Sleep

BELINDA’S COLORING BOOK

On behalf of the patients and their families at NYU Langone Medical Center, we would like to thank Belinda for the wonderful community service project coloring books she created. Being in the hospital can be a difficult time for anyone, child or adult alike. Having something to do can help pass the time, encourage movement and spark a conversation.

Peggy Guinnessey,
Belinda, Pamela Mohr and
Rebecca Kornstein

The coloring pages that Belinda searched, printed, organized and bound for us for 3 separate units will go a very long way to supporting the work that we do by enhancing the physical and emotional goals that we set for the patients. Her array of pages lets patients make choices based on interest and age. We are grateful for the time spent on this project and so happy that she chose us to spend her community service hours on. We are fortunate to have made this wonderful connection with Belinda and hope to continue our work with her for years to come. We are happy to award Belinda 10 hours toward her 2016 community service.

 

 

 

 

IMPACT WEEKEND FROM THE NYU HOCKEY TEAM

The NYU Hockey Team celebrated their IMPACT Weekend from January 29‐31, 2016. They were able to raise a total of
$467 for FACES, which is the most raised for an organization this season! We are so grateful for their support.

A note from a FACES friend:
"On behalf of Sean, Liam, Lisa and myself, I want to thank you for the wonderful experience we had at the NYU hockey game on January 31st. You and your support team made us all feel like rock stars. Your time energy and effort was truly remarkable and greatly appreciated. Thank you once again and hope to see you all again soon. -John".

 

FATTY SUPER BOWL SNACKS DIET HELPED SAVE AN EPILEPTIC BOY’S LIFE

 

 

FACES is pleased to accept applications for the 2016 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 MAY 6, 2016

If you have any questions or would like for information about the program, please email FACESscholarship@nyumc.org

Summer camp can be a wonderful experience for children with epilepsy. Our Summer Camp Scholarship Program serves children with epilepsy in financial need and allows them to experience fun, confidence-building activities.

PLEASE CLICK HERE TO VIEW APPLICATION

If you have any questions or would like more information about the program, please email FACESscholarship@nyumc.org. Your message will be returned within 48 hours.