April 2015

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APRIL 2015 FACES E-NEWSLETTER

  1. RECIPE OF THE MONTH
  2. LEARN ABOUT RNS
  3. THE SCIENCE BEHIND EPILEPSY AND DEPRESSION
  4. FACES GALA
  5. RUNNING ANOTHER 13.1 MILES WITH TEAM FACES
  6. MEET DANA
  7. HONORING JOEY’S LIFE
  8. CHELSEY’S STORY
  9. NOTEWORTHY NEWS

1) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

ROASTED CARROT AND GINGER SOUP

Nutritional Analysis (per serving) 91 calories, 1g fat, 5g fiber, 1g protein. Serves 4 people.

Ingredients:
1 lb. carrots, peeled and chopped
½ lb. parsnips, peeled and chopped
½ large onion
1-2 inch piece raw ginger (depending on desired spice level)
1 tablespoon of light brown sugar
1 teaspoon of cayenne pepper
4 cups low-sodium vegetable broth
Salt and pepper to taste
Green onions for garnish

Directions:
Preheat the oven to 350 degrees F. Peel and chop carrots, parsnips, onion, and ginger and combine in a roasting pan. Sprinkle with brown sugar. Pour 1 cup of the broth into the pan, cover with aluminum foil, and bake for 2 hours. Remove from oven; transfer the vegetables and broth to a large soup pot and add remaining 3 cups of broth. Add salt, pepper, and cayenne (depending on desired spice level). Bring to a boil, reduce the heat, and simmer for 15 minutes. Using an immersion blender, puree the soup adding more broth if necessary. Garnish with sliced green onions.

2) LEARN ABOUT RNS

By: Alyson Silverberg, DNP, MSN, APN-BC, CNRN

The most exciting Neurosurgical intervention for Epilepsy in this century is finally here!

What is Responsive Neurostimulation (RNS®)?
Responsive Neurostimulation (RNS®) or the NeuroPace System® is an implantable therapeutic device that was approved by the U.S. Food and Drug Administration (FDA) for commercial use in November 2013 after over a decade of research and testing. RNS is a novel technology designed to continuously monitor the brain’s electrical activity, detect abnormal electrical activity and respond by delivering imperceptible levels of electrical stimulation to normalize that activity before a seizure develops. This system is unlike any previous nervous system device because it is the first closed-loop responsive brain stimulation system (cortical stimulation) able to record brain activity, recognize abnormal seizure activity and provide responsive brain stimulation.

The NeuroPace® RNS® System is the only device currently available for treatment resistant or medically refractory epilepsy, partial onset seizures that have not been controlled with two or more antiepileptic drugs. Once implanted, the RNS device delivers stimulation when it detects seizure activity. 55% of patients experienced a 50% or greater reduction in seizures two years after implantation. It is estimated that 400,000 U.S. patients could benefit from this new technology.

How is RNS Used?
The Neurostimulator and leads are implanted by a Neurosurgeon during an operation that typically takes three to five hours. Clinicians will use the programmer to non-invasively retrieve stored data, analyze and program the detection and stimulation settings of the Neurostimulator, and customize therapy for each individual patient. Patients use the remote monitor from home to transmit real time recordings of their brain electrical activity (EEG) and other information stored in the neurostimulator. Your epilepsy team will review and analyze this information over the Internet between office appointments to help with patient management and programming.

Who is a candidate for the RNS system?
RNS is indicated for adjunctive therapy in reducing the frequency of seizures for patients 18 years of age or older with partial onset seizures who have undergone diagnostic testing that localized no more than 2 seizure areas or foci. Candidates are refractory to two or more antiepileptic medications and currently have frequent and disabling seizures (motor partial seizures, complex partial seizures and/or secondarily generalized seizures). The RNS® System has demonstrated safety and effectiveness in patients who average 3 or more disabling seizures per month.

Neurostimulator and Leads: A closer look

The RNS includes implantable and external components:

Implantable components include the RNS Neurostimulator and leads (1). The neurostimulator is a battery-powered, microprocessor-controlled device that is placed within the skull and beneath the scalp by a surgeon. It is connected to one or two leads that are placed within the brain or rest on the brain surface in the area of the seizure focus. Programmer (2) and Remote Monitor (3). Patients are provided a Wand and Remote Monitor to use at home to transfer information from the Neurostimulator to the PDMS through the internet.

Real time EEG recording:

Dr. Werner Doyle in the OR at NYU:

Ben-Menachem, E. & Krauss, G. L. (2014). Responsive neurostimulation--modulating the epileptic brain. Nature Reviews Neurology, 10, 247-248.

Cavazos, J.E. (2014). Responsive neurostimulation in epilepsy therapy: Some answers lingering questions. Epilepsy & Behavior, 34, 25-28.

Gregory, K.B. (2013). Neurostimulation in the treatment of epilepsy. Experimental Neurology, 244, 87-95.

3) THE SCIENCE BEHIND EPILEPSY AND DEPRESSION

By: Sloka Iyengar, PhD.

Epilepsy – or the predisposition to generate epileptic seizures can be associated with accompanying psychiatric condition like depression, anxiety and psychosis. These accompanying conditions are known as ‘comorbidites’. In this article, we will look at what is known about the comorbidity of depression in individuals with epilepsy, and what scientists are doing to figure out the link between epilepsy and depression in greater detail.

The link between epilepsy and depression was noted a long time ago – it was in 400 BC that Hippocrates noticed that ‘melancholics ordinarily become epileptics, and epileptics, melancholics’. Indeed, it has been noticed that depression is 3-5 times more likely to be seen in people with epilepsy than those without epilepsy. One may say that this could be because of the social stigma that people with epilepsy can face. That may be true, but it has also been found that individuals with a family history of depression can be more likely to develop epilepsy. This relationship between epilepsy and depression is called a ‘bidirectional’ relationship, and scientists think that there is something unique in the brains of these individuals such that epilepsy and depression co-exist.

What are the reasons depression and epilepsy co-occur more than one would expect by statistics alone? Numerous mechanisms have been proposed, although it is most likely that there is a combination of mechanisms at play, rather than just one. The experiments to understand this phenomenon are done using imaging techniques (e.g. MRI) in people, but also using experimental rodents such as rats and mice in the laboratory.

Neurotransmitters like acetylcholine, dopamine, the inhibitory neurotransmitter gamma amino butyric acid (GABA), excitatory neurotransmitter glutamate, norepinephrine and serotonin (5-HT) have been shown to play a role. Stress can play a major role in the development of depression because of its effect on the hypothalamic-pituitary-adrenal axis (HPA). Inflammation in the brain and neurotrophins (proteins responsible for proper survival and growth of neurons) can also explain the occurrence of depression along with epilepsy.

What are the treatment strategies for depression associated with epilepsy? Anti-depressants that are used in the treatment of depression alone are a possibility, but one has to be mindful of drug-drug interactions between anti-epileptic drugs and antidepressants and potential side-effects. Hence, therapies that do not require medication (also known as non-pharmacological treatment strategies) are used. Some of them are vagus nerve stimulation (VNS), aerobic exercise and the ketogenic diet.

Sloka S. Iyengar, PhD is an epilepsy researcher and has been investigating mechanisms that can cause groups of neurons to generate and sustain spontaneous seizures. For her graduate work, Sloka worked with Dr. David Mott where she used electrophysiology to study epileptic circuits. In New York, Sloka conducted her postdoctoral research at the Nathan Kline Institute where she examined the role of a part of the brain called the hippocampus in seizures. Presently, she has switched focus from basic epilepsy research to clinical research with Dr. Jeffrey Politsky at the Northeast Regional Epilepsy Group. In addition to research, Sloka also has a strong interest in epilepsy advocacy and education

4) FACES GALA

From left: Warren Lamert, Randi Levine,
Jeffrey Levine, and Michael Weisberg.

Angela and Matt Stone

On Monday night, March 3, 780 guests attended the Finding A Cure for Epilepsy and Seizures (FACES) Gala, held at Pier Sixty at Manhattan’s Chelsea Piers. Over $4.7 million was raised at the event to support epilepsy research and the advancement of new therapies at NYU Langone. Mike Myers, the actor, comedian, screenwriter, and film producer best known for his appearances on Saturday Night Live and for his roles in the Austin Powers and Shrek films, served as the gala host.

A portion of the proceeds from FACES events will be used to support the funding of two outstanding research projects and fellows, each mentored by a preeminent scientist. The first project will use viral and molecular biology techniques to create a switch in a very specific group of interneurons, the cells that shut off seizures, so that these cells can be turned on with a specific drug. The second will dissect and analyze the spread of seizure rhythms so they can be stopped in their tracks.

From left: Mary Quick, gala honoree; Dr. Orrin Devinsky;
Margaret Pedersen ,host Mike Myers of 'SNL'and
Dean and CEO Dr. Robert I. Grossman.

Dr. Jacqueline French

“We believe these research projects hold tremendous promise, and is why we so deeply appreciate the time, energy and philanthropic support our generous donors bring to our Comprehensive Epilepsy Center and FACES programs,” said Robert I. Grossman, MD, the Saul J. Farber dean and CEO, in his opening remarks.

During the ceremony, Jacqueline French, MD, professor of neurology, was honored for her influence on the development of new epilepsy therapies, and Mary Quick, whose daughter Margaret Pedersen is an NYULMC patient, was honored for her dedication to helping families who are living with the challenges that epilepsy brings. Additionally Leah and Michael Weisberg were recognized for generously underwriting the event. Also celebrated were gala chairs Angela and Matt Stone, co-creator of South Park and co-writer of The Book of Mormon, and auction chair Barbara Walsh, an advocate for individuals living with epilepsy.

Orrin Devinsky, MD, founder of FACES, professor of neurology, neurosurgery, and psychiatry, and director of NYULMC’s Comprehensive Epilepsy Center, highlighted current research by Tanya Spruill, PhD, assistant professor of population health and medicine at the Center for Healthful Behavior Change, who is developing interventions to reduce the socioeconomic gap in epilepsy care.

From left: Kate Picco, Loretta Glucksman, and Esther Fein.

Program highlights included a speech made by one of Ms. Pedersen, who is a patient of Dr. Devinsky. Also of note was the annual live auction–one of the largest held in New York–conducted by auctioneer Hugh Hildesley, executive vice president of senior business development at Sotheby’s. Prizes included tickets to the Billboard Music Awards.

Special guests in attendance included: Loretta Brennan Glucksman and Kate Cooney Picco, Amy Pollner Moritz, Randi and Jeff Levine, Donna Emma, Warren Lammert, Lucas van Praag, Susan and David Swinghamer, Veronica Mainetti, Brian Friedman, Suzanne Peck, Lori and Stewart Karger, Carolyn Kotler, Katie and Todd Boehly, Alice Thorpe, and Tzili and Leon Charney.

5) RUNNING ANOTHER 13.1 MILES WITH TEAM FACES

For the 2nd year in a row, TeamFACES filled the streets of Manhattan with purple during the United Airlines NYC Half Marathon on Sunday, March 15, 2015!

Our 5 incredible runners ran the 13.1 mile race with hopes of further spreading epilepsy awareness. For some, this race was dedicated to proving that a person can overcome the challenges of living with epilepsy, while for other runners, it was a chance to honor loved ones who are currently affected by epilepsy.

Together, this year’s half marathon team raised over $23,000 for the programs and services at FACES!

The FACES staff, our volunteers, and the epilepsy community are proud to have these inspirational leaders run on behalf of our mission. Each runner continues to provide hope to countless individuals and families with each passing race.

To read more about each runner or to make a donation today, please click here

Take a look at TeamFACES on race day!

6) MEET DANA

Many people make it a point to not define someone by their medical condition or disorder that they endure. As much as I agree with that standard, there are so many parts of my life that I look back and think “If I did not have this condition would I be a different person?” The truth is I would not be who I am today if I did not have epilepsy.

I was formally diagnosed at eleven years old after having countless absence seizures and tonic-clonic seizures. Throughout most of my adolescence and teenage years, my family and I held on to the hope that maybe I would outgrow this condition like some children. Taking my medication twice a day daily seemed to do the trick. The medicine worked properly throughout my teenage years.

I began having seizures again and my first year of college; I had 4 tonic-clonic seizures sporadically that year. The only people who knew were the people closest to me. I felt very isolated, delayed, and powerless. All of my friends were packing and getting ready to go away to school, while I was home trying a new medication… hoping that it was successful. I then realized my life was altered. The path that I had planned had taken a complete left turn. I despised having epilepsy. I was forced to acknowledge it and I hated that the most. I just saw myself as a burden to the people around me and it made me embarrassed. Despite the lack of control in my life, that year surprisingly ended up being one of the most memorable. I attended a community college where I had no seizures during school hours; and I ended up making the 2008 Philadelphia Eagles Cheerleading Squad. I felt that my life was finally back where I wanted it, but I couldn’t shake off the feeling of failure. There was so much to be thankful for that year, but I was too busy focusing on how to act like everything was “normal”, and the positives seem to slip by.

I went five years with no seizures and it was the longest I have ever gone without having any. I reached a point where I was able to disconnect myself from the condition. I still took my medicine twice daily, but I began to get careless. I had a terrible diet, an awful sleep schedule, and took my medication at different times during the day. There were probably times where I forgot to take it. Finally, my body and brain had had enough of my careless ways. I ended up having 8 tonic-clonic seizures throughout the past 2 years, along with a few atypical absence seizures. I would go months where everything was fine and then all of a sudden, I would have another seizure. I was forced to acknowledge epilepsy again, but this time, I welcomed it. Instead of disassociating myself, I
had learned to accept this condition by who I was and who I wanted to be. I didn’t realize how epilepsy was truly controlling my life. By me trying to ignore it, I lost sight of taking care of myself. I am so thankful for the supportive people in my life. I would be nowhere without my family. They have been there for me since the start of it all and words cannot express the level of gratitude I have for them. I am a firm believer that whatever someone’s situation is, it will shape you into who you are as an individual. I would be lying if I said that I still don’t fear certain risks or outcomes that I know exists with having epilepsy, but I think that’s what opens my eyes to the beauty of my life. I count my blessings.

The past two years have been some of the biggest blessings in disguise. Once I recognized the reality of my situation, everything seemed to fall into place. I am happier, accepting, and at peace. I found myself and I discovered who I want to be. I want others to understand epilepsy and understand the facts about it. There is so much we can learn from this condition and I know it could open many doors into learning more about other disorders. For individuals who ive with epilepsy or a seizure disorder, they understand that just because you lose control of your brain and body, it doesn’t mean it should control your spirits. The strength that one possesses after a life altering experience, such as epilepsy, determines more of your character than you know. The struggles that you withstand today are only the beautiful beginnings of the life you encounter tomorrow.

7) HONORING JOEY’S LIFE

By: Julia Buldo-Licciardi

The Licciardi family with Mike
Myers at the FACES Gala

At three years old, my younger brother Joey was diagnosed with benign rolandic epilepsy, a common childhood seizure syndrome that spontaneously stops in almost all patients before adulthood. Joey’s epilepsy was under control until his thirteenth birthday. A few days later, we found Joey faced down into his pillow and unresponsive. My brother was dead. He died from Sudden Unexpected Death in Epilepsy (SUDEP).

I grew-up in a tight-knit, Italian family and my brother was always the center of attention. My parents harbor tremendous guilt, thinking they could have done more to prevent my brother’s death. My questions too were endless.

Over the years, I became more curious about Joey’s condition and began volunteering at FACES. I was having such positive experiences that my mom, dad and brother who gradually became active members of the FACES community.

Our first family event was the ING NYC Marathon. November 4, 2013 marked the 10th year of my brother’s passing and FACES graciously welcomed my family into TeamFACES. We helped raise $15,000 in Joey’s memory and for the future of SUDEP research. What could have been a dreadful benchmark, became a beautiful celebration of his life and a time of healing.

Julia and her brothers
dressed up as Austin Powers,
Dr. Evil, and Vanessa
in London, summer 2000

My family then became involved with the first freshFACES cocktail party. The event fell on Joey’s birthday and FACES helped us celebrate it. We gathered family, his close friends, and danced the night away.

The icing on the cake was when we discovered Mike Myers, Joey’s comedic idol was going to be the FACES Gala Master of Ceremonies. Joey, our younger brother, Michael, and I, dressed up as Austin Powers, Dr. Evil and Vanessa on Halloween 2000. We traveled to London in those costumes that summer and took a Christmas card photo with a London Grenadier Guard. When the FACES staff saw the photo, they shared it with Mr. Myers and generously allowed us to meet him. To be able to meet and share a laugh with the man who brought so much laughter into our home and hearts was the most incredible gift anyone could have ever given us. Mr. Myers was more talented and genuine than we could have ever imagined and it was truly an evening we will never forget.

Most recently and importantly, FACES enrolled Joey in the North American SUDEP Registry. The purpose of the SUDEP Registry is to learn more about the causes that lead to sudden unexpected death in the general population of epilepsy patients. The registry collects DNA and brain tissue samples for scientific studies about the causes of SUDEP. We are hopeful his case will contribute to a safer future for all those living with epilepsy and are grateful Dr. Devinsky is leading the way with his team.

Four years ago it was me who wanted to help FACES. I had no idea it would really be FACES helping me and my family. We are eternally grateful to FACES for guiding us through our journey in the most positive, productive way possible.

Oh behave,
Julia Buldo-Licciardi and Family

8) CHELSEY’ S STORY

My Story, My Success

My name is Chelsey Loeb. I have had epilepsy for 12 years, daily seizures, medical tests galore, brain surgery, implanted technology, numerous pill combinations, I lost my license, had emotional mood swings... yet I learned to live life positively, take hard hits lightly, push risks to the side, smile at the past, and look forward to the future.

June 2003:
At the age of 15 I began having strange feelings a couple of times a day. Day dreams that I somehow remembered having at night as a toddler, deja vu, and recurring scents. I was there, but I wasn’t there, almost feeling invisible. Life was continuing around me, seeing people interacting, going about their business, but I couldn’t comprehend it nor was I able to participate or speak, though I tried. It ended about 30 seconds later. Sometimes when I came out of my dream, I’d be standing in a puddle with wet pants. I kept it a secret.

August 2003:
My day dreams continued coming. School was starting again in a couple weeks. I can’t go back to school with the thought of having an accident. I told my parents about it, and they brought me to the doctor who sent me to a neurologist. Seizures?! I thought that was when you shake on the floor unconsciously, not having these strange day dreams. I was put on medication right away and my seizures decreased.

2007-2008:
One year seizure free! I was able to get my license, be out and about, alone, and confident. I was really focused and successful in college. The daily fear in the back of my mind faded away.

2009-2014:
My seizures slowly began coming back. I would get them every few months and they slowly increase back up to a few times a week. They also changed a bit by lasting longer, losing my memory of what had occurred, wandering. I also needed to think about my life as an adult. Being a successful teacher, starting a family, effects of my seizures on my memory over time. When thinking about the changes in my seizures getting worse and how it could affect me in the future, I realized it was time to move on.

August, 2014:
My first appointment was with Dr. French. I walked in nervously starting over with someone new to me; I left her office with a new outlook on finding ways to face epilepsy. The possibilities seemed endless, the positive thoughts gave me a boost, and the “we” in our conversation was supportive and comforting.

Testing. The video EEG, CT scan, MRI, WADA, some things I had never heard of before. It may sound a bit intimidating, but I met some amazing people from the NYU Langone Comprehensive Epilepsy Center. I became more interested to learn all the medical technology, how the brain works, and research.

November 2014:
It was my time for surgery. I met the amazing Dr. Werner Doyle who explained everything in the best analogies to make the process and possibilities easy to understand. My first surgery involved putting the wires inside on my brain to see exactly where things were happening, especially during seizures. From there, the big decision: should a part of my brain be removed?, implant the RNS?, or both? I put all my trust in such an astounding team, understanding possibilities and risks, and went for them both.

Today and Looking Towards the Future:
Looking back, the whole experience beginning with my first visit to the NYU Langone Comprehensive Epilepsy Center has been life changing. There is a lot that I have learned, not just about a life with epilepsy, but about having a positive outlook and a group that supports each other (FACES), that I am now a part of.

Not every change or trial for me has solved all the problems of my daily life with epilepsy. Despite the endless efforts, I do not consider any of them a failure. Every reaction to an attempt to better my life has been helpful and the clinicians learned something each time from my case. The doctors learning about me will help others going through something similar in the future. If the seizures Dr. Friedman sees in my brain waves through the RNS are similar to another patient’s in the future, all the changes he discovered that mine needed over time will simply answer the questions about theirs. When Dr. French works her magic and finds the best medicines to fight unique seizures like mine by trying different combinations and amounts, that perfect mix will solve another future patient’s seizures similar to mine. When Dr. Doyle has another patient who has a procedure similar to mine, he will remember his success of both removing the brain tissue and implanting the RNS during one surgery safely rather than two, and that patient will happily leave the hospital soon after with ease.

My willingness to take risks and to battle against the seizures is not only for me. In doing so, I am hoping to help the many others with epilepsy as well as being a part of research studies of potential outcomes leading towards the success of decreased seizures. My future is unpredictable, but whether the seizures come or go, it is because I am an epilepsy patient focused on success.

9) NOTEWORTHY NEWS

Top 10 National Press Articles

  1. CHRIS BORLAND RETIRES FROM NFL OVER CONCUSSION FEARS: ‘I DON’T THINK IT’S WORTH THE RISK’
  2. NEUROSURGEON SANJAY GUPTA HONORED FOR REPORTING ON MEDICAL MARIJUANA
  3. MARIJUANA EXTRACT FOR CHILDREN WITH EPILEPSY IS QUESTIONED
  4. EPILEPSY DRUG MAY REVERSE MEMORY LOSS OF POTENTIAL ALZHEIMER’S PATIENTS
  5. THE SURPRISING STORY OF MEDICAL MARIJUANA AND PEDIATRIC EPILEPSY
  6. FOR CHILDREN’S SEIZURES, TURNING TO MEDICAL MARIJUANA
  7. LOOKING TO INSPIRE OTHERS WITH SEIZURES
  8. GW PHARMACEUTICALS INITIATES FIRST PHASE 3 PIVOTAL TRIAL FOR EPIDIOLEX IN DRAVET SYNDROME
  9. MARIJUANA EXTRACT FOR CHILDREN WITH EPILEPSY IS QUESTIONED
  10. 5-YEAR-OLDS SAVE MOM WITH EPILEPSY BY CALLING 911

Epilepsy is one of the world’s most common neurological diseases, but it remains one of the least funded and recognized. By June 1, 2015, FACES would like to raise $100,000 to help foster epilepsy and seizure awareness, but we need your support!

You can help move FACESforward by joining the 2015 campaign – moving us one step closer to finding a cure.
We encourage you to:

DONATE in honor of a friend, a doctor, or yourself.
CREATE your own FACESforward 2015 Fundraising Page.
Tell your story and encourage friends & loved ones to give toward your personal goal!
PROMOTE FACESforward 2015 by telling others about it, and encouraging them to participate! E- mail everyone you know!
SHARE the link on your Facebook, LinkedIn and Twitter profiles, and in your e-mail signature.

Thank you for helping the FACESforward 2015 Campaign

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