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FEBRUARY 2018 FACES E-NEWSLETTER 1) DR. FRENCH’S LENNOX-GASTAUT STUDY REACHES THIRD PHASE 2) FACES 2018 GALA SAVE THE DATE 3) WELCOME DR. INOYAMA! 4) FACES MARLBORO 5) BOSTON BACKWARDS 6) DEAR ROSIE 7) EEGS – WHAT YOU NEED TO KNOW 8) TES MINI SYMPOSIUM 9) EPILEPSY FOUNDATION PIPELINE AND COMMUNITY DAY 10) RECIPE OF THE MONTH 11) NOTEWORTHY NEWS

1) DR. FRENCH’S LENNOX- GASTAUT STUDY REACHES THIRD PHASE

On January 24th, Dr. French, along with researchers from Massachusetts General Hospital, Elizabeth Thiele, MD and Eric Marsh, MD were published in The Lancet. Their study, “Cannabidiol in patients with seizures associated with Lennox-Gastaut syndrome (GWPCARE4): a randomized, double-blind, placebo-controlled phase 3 trial” has moved into its third phase, studying the efficacy of cannabidiol on Lennox-Gastaut patients. Patients with this rare syndrome have seizures that are often treatment resistant to medications. The study found that adding cannabidiol as a treatment option is effective in treating drop seizures associated with Lennox-Gastaut syndrome. To read the entire study, click here. Congratulations to Dr. French and the entire research team!

2) 2018 FACES GALA SAVE THE DATE

Join us on Monday, March 5th at Pier Sixty, Chelsea Piers for our annual FACES

Gala! The gala raises crucial funds to enhance clinical services at NYU

Langone’s Comprehensive Epilepsy Center, one of the largest programs of its

kind in the country, and strengthen its efforts to develop innovative therapies

that boost patients’ health and wellbeing. There will be a dinner and both a

silent and live auction—featuring unique experiences, luxury items, vacation

packages, and more—as we celebrate the Comprehensive Epilepsy Center’s

incredible work and rally support for future accomplishments. For more

information and to purchase tickets, contact 646-558-0900 or

https://nyulangone.org/give/events/faces-gala

3) WELCOME DR. INOYAMA!

Katherine Inoyama, MD, is an adult epileptologist who received her medical

degree from Georgetown University and completed Neurology residency

training at Thomas Jefferson University Hospital, followed by a 2-year

Neurophysiology/Epilepsy fellowship at Stanford University. She has been in

private practice for the last two years and is excited to be joining the team at

NYU in pursuit of advancing our understanding of epilepsy through research

while providing comprehensive and compassionate care to patients with

epilepsy. She has clinical and research interests in women’s issues in epilepsy,

epilepsy genetics, and co-morbidities associated with epilepsy such as

cognitive impairment, mood disorders, and

migraines.

4) FACES MARLBORO

By Joan Polkowitz

Teens from Marlboro, New Jersey spent the

early part of their Super Bowl Sunday the

same way they have for the past 3 years …

bagging groceries at their local Shoprite Supermarket. The kids got up

early and worked hard for five hours! Some kids did one or two hour shifts

and some bagged the entire five hours! The FACES Club in Marlboro was

started in 2014 by Carly and Rachel Polkowitz, a patient of Dr. Devinsky

and her sister, and is still going strong! The kids are not only raising money

but also, awareness as many of the customers ask their FACES baggers

about their cause. They have met patients and caretakers alike who are

grateful for the kids bringing the need for a cure for epilepsy front and

center. At the end of the day, the kids raised $1,100 for FACES and are

looking forward to their next fundraiser!

5) BOSTON BACKWARDS Loren Zitomersky and his father have been raising money for epilepsy

since he was 12 years old; together they have raised over $250,000. After

recently qualifying for the Boston Marathon, Loren wanted to do something

BIG! And so the idea of running the Boston Marathon backwards was born.

Loren is attempting to beat the Guinness World Record for fastest

backwards marathon, which right now is held by Xu Zhenjun with a time of 3

hours, 43 minutes, and 39 seconds. While his goal is to beat Xu’s record, his

ultimate goal is to honor his brother Brian’s memory, who passed away at the

age of 7 due to seizures and of course, raise funds to find a cure! You can read

more about Loren’s journey at www.bostonbackwards.com

6) DEAR ROSIE

Dear Rosie: I was diagnosed with epilepsy 3 years ago. I am trying to embrace my diagnosis and relearn how to love myself for who I am. How can I begin to do that? Sincerely, Lovely Loveless Dear Lovely Loveless, Phew. Embracing the reality of a significant life change is always hard, especially when you did not expect it and have no control over it. There are various paths you can take on this journey, and it’s different for everyone, so I can only attest to mine. And as retrospect can make us wiser, I have come to see my tenure with epilepsy through the lenses of how some people deal with trauma: denial, anger, bargaining, depression and acceptance. Denial can be prevalent when first being diagnosed because it is easier to focus entirely on this confusing new challenge and the questions attached to everything your Doctor tells you. We can convince ourselves that one simple medication would make it go away or that it’s just a health debacle that will pass. But when it doesn’t pass, anger prevails with the continued seizures and the loss of independence. This frustration can be caused by the stripping of your driver’s license, tightening on your ability to socialize with friends, especially when alcohol’s involved, or even maintaining a full time job.

Next we attempt to bargain away every potential cause for our epilepsy with “if only” statements, searching for an excuse and assigning blame on unrelated incidents. For me, I thought “if only I didn’t fall that one time skiing 4 year ago” or “if only I didn’t take my health for granted.” Guilt is usually bargaining’s companion and something we force upon ourselves when there’s no clear culprit. Then the depression kicks in. Almost everyone I’ve met with epilepsy would all agree that it can be hard to recognize at the moment if and why you are depressed. Is it because of medication or the weight of reality, or both? But looking for something/someone to blame will only keep you down. We can’t control much, except how we look at the world and what we want to do with our time here. Therefore, after all of this, acceptance is the best way to embrace your new identity and move forward. Accept that seizures themselves are temporary. Side effects of medications are real, yet can be resolved. And if surgery is part of your treatment, recovery takes time and patience, but you will be okay. All of the routes to epilepsy treatment can by rough, but they do not steal the intangible things that make you, you. So, Lovely Loveless, the fact that you are already asking about how to embrace this new identity makes you well ahead of where I was 3 years in. And since Valentine’s Day is just around the corner, let's take the time to love ourselves first, before anyone else. -Rosie

7) EEGS – WHAT YOU NEED TO KNOW

EEG (Electroencephalogram)

The below story was originally posted on

https://seizetheday797.wordpress.com, a blog written by Naomi Schachter.

EEGs. If you have epilepsy, you’ve had an EEG. Whether it’s 20 minutes in a

doctor’s office, 48-72 hours at home, or 5 days in the hospital, it sucks. I know

because I’ve done all three, many, many times.

To start, here’s the official definition/description of an EEG, from the National

Epilepsy Foundation:

EEG is an important test for diagnosing epilepsy because it records the electrical activity of the brain.

It is safe and painless. *sometimes the electrodes have cut the skin on my head just a little bit, and taking the electrodes out of your hair can hurt, but the actual EEG doesn’t hurt at all*

Electrodes (small, metal, cup-shaped disks) are attached to your scalp and connected by wires to an electrical box. (The wires can only record electrical activity; they do not deliver any electrical current to your scalp.) The box in turn is connected to an EEG machine.

EEG shows patterns of normal or abnormal brain electrical activity. Some abnormal patterns may occur with a number of different conditions, not just seizures. For example, certain types of waves may be seen after head trauma, stroke, brain tumor, or seizures.

*This is based off of my own experiences and I am sure many people have had

different experiences with EEGs.*

I just had an EEG at home, from Wednesday, December 27th to Friday,

December 29th. Very short. Really easy. Easy because I’ve done this a billion

times before and knew what to expect. I wasn’t so embarrassed about it that I

couldn’t send a snapchat to a friend (it may seem like an utterly ridiculous

issue, but it is much deeper than that). I didn’t cover my head with the cute cat

hat I had used in the past.

You look completely ridiculous when you have an EEG. There is nothing to be

embarrassed about. But inherently you are. It makes you different, weird. It is

intricately and intimately associated with the shame many with epilepsy feel

about having seizures.

If I were to go out in public when doing an ambulatory EEG (fancy name for

when I do them at home), I would be mortified. And that’s why I don’t go out

in public when I do an at-home EEG. It would cause unnecessary stress,

anxiety and embarrassment.

EEGs in the hospital are a whole other story. You get videoed the whole time

and see your brain waves on a monitor. The purpose of the video is to be able

to match the brain waves to what is physically happening at that moment.

With the ambulatory EEG you write down what you do during the day and

press a button if you think or if you know you had a seizure.

In the hospital, I’d compulsively watch the monitor for the correspondence of

waves moving to my face moving. It was all-consuming. I was also tethered to

the EEG machine. I could unhook for a certain amount of time and walk

around but that didn’t make up for the feeling of being inside for a long time.

Another thing that really sucked about the hospital was that they would wake

me up every morning at 6:30am to listen to my lungs and take my blood

pressure. I understand, these things are very important. However, that’s not

why I’m there. I have epilepsy. I need my sleep. When you’re in a hospital for a

long time, it’s the little things that can really start to irk you.

All of the times I did video EEGs, from my count about 4, I was on the pediatric

floor. I was almost always the oldest and when volunteer high schoolers came

to play with the kids, I turned around so they couldn’t see how old I was. Now

I’d probably want to inform them about epilepsy. However, back then it was

the most mortifying experience.

Oh don’t forget while at home and in the hospital you can’t shower, chew gum

and a variety of other things.

Yes, EEGs can really be a bummer, but they are really important and

informative. They are truly painless and in my case it’s a great excuse to watch

a ton of tv.

In total I’ve probably had close to 20 EEGs, in the hospital, at-home, and in the

doctor’s office. Although from most of them I’ve received really bad news,

without it I wouldn’t have received the good news, like the EEG I just did.

From my neurologist: “Best EEG ever, no seizures, occasional spikes of 1/5th

of a second.”

I wish you all easy, quick, and fruitful EEGs! DO NOT give up!

Lots of love and seize the day!

Naomi

Photo Caption: Where the electrodes typically go when you get an EEG. I also

always get two on my chest. Thanks to this amazing and brave young person

for allowing this photo to be on the internet. Source- fmajor/Getty Images

8) TES MINI-SYMPOSIUM

By Dr. Lucia Melloni

On December 12, 2015 FACES generously sponsored a mini symposium

entitled Current State of Transcranial Electrical Stimulation: Progress and

Challenges, in which a panel of 6 internationally renowned experts discussed

the latest research on transcranial electrical stimulation – a neuromodulation

technique which has drawn much attention in recent years as it promises to

non-invasively affect brain responses and hence to treat diverse diseases from

depression to stroke to memory dysfunction. While initial promising results

using transcranial electrical have been obtained with many clinical trials

underway, the results of these studies have been variable. As a lack of a basic

mechanistic understanding of how externally applied electrical fields affect

neural activity may be primary contributor to outcome variability, we invited

an expert panel to discussed the latest research aiming to understand the

mechanisms of action of transcranial electrical stimulation in full brains and

hippocampal slices, primates and humans, and ex vivo and in vivo.

Experts in the mini symposium included Dr. Anli Liu (NYU), Mihaly

Voroslakos/György Buzsáki (NYU), Ashesh Mehta (Hofstra), Bart Krekelberg

(Rutgers University), Christopher Pack (McGill University) and Lucas Parra

(CUNY). They presented their latest research evaluating the challenges

encountered when bringing this technique to the clinic. Their diverse views

and insights provided best practice recommendations that can guide clinicians

and scientists interested in developing the next generation of transcranial

electrical stimulation experiments.

9) EPILEPSY FOUNDATION PIPELINE AND COMMUNITY DAY Our own Dr. French will be speaking at the Epilepsy Foundation Pipeline

Conference and Community Day, held on February 22-24 in San Francisco!

This conference brings together people living with epilepsy, their families,

friends and advocates for a day of learning, support and networking. Learn

more at www.epilepsy.com/communityday2018

10) RECIPE OF THE MONTH

Make some sweets for your sweetie with this keto-friendly chocolate recipe!

Keto Chocolate- Recipe adapted from the Charlie Foundation website

This recipe makes 30gm of prepared chocolate: 204 Calories, 8:1 Ratio with

1.6 g net carbs, 1 g protein and 21.5 g fat. Please contact your keto dietitian to

fit this into your meal plan.

Ingredients:

4gm Unsweetened Cocoa such as Hershey's Natural (powder)

26gm Butter or Ghee 5 drops Liquid Stevia Optional: vanilla extract (make sure it is alcohol

free) or peppermint extract Directions:

1. Melt butter. 2. Stir in cocoa and mix well. 3. Sweeten with 5 drops of Liquid Stevia. 4. Drop into small circles onto waxed paper or into candy molds of your

choice. 5. Refrigerate for 10 minutes or until firm. 6. Store in refrigerator or freezer for several weeks.

Please contact your dietitian to adjust the recipe for you or your child’s

ketogenic diet. 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.

11) NOTEWORTHY NEWS

Top National Press Articles

1. Does CTE Call for an End to Youth Tackle Football

2. Sleep Apnea Sufferers Claim Discrimination After Losing

3. Three People Made Unemployed Over Sleep Apnea Sue Ex-Employers Citing Disability Discrimination

4. FDA Clears First Smart Watch to Detect Seizures, Manage Epilepsy

5. With Strategic Zaps to the Brain, Scientists Boost Memory

6. Six Sleep Experts On What to Do When You Worry Yourself Awake

7. Women Who Do This All Night Suffer the Most at Work the Next Day

8. Add-On Cannabidiol May Curb Seizures in Lennox-Gastaut Syndrome