VISIT US http://faces.med.nyu.edu/faces-e newsletter

DECEMBER 2017/JANUARY 2018 FACES E-NEWSLETTER 1) HONORING DR. FRENCH AT AES 2) 2018 SAVE THE DATES 3) FACES SCHOLARSHIPS 4) AGED INVENTORY 5) BELLA REESE 6) FUDGERAISERS 7) SHOES FOR A CAUSE 8) WILDLIFE WITH WATERCOLORS GREETING CARDS 9) RECIPE OF THE MONTH 10) NOTEWORTHY NEWS

1) HONORING DR. FRENCH AT THE AMERICAN EPILEPSY SOCIETY ANNUAL MEETING

Dr. French was honored at the American Epilepsy Society annual meeting on Saturday, December 2nd with the William G. Lennox Award for lifetime accomplishments in epilepsy. We are so proud of her incredible achievements!

2) 2018 SAVE THE DATES

Mark your calendars! 2018 is sure to be another fantastic year for the FACES family. See below for a list of our 2018 events:

January 9, 2018 – Peace of Mind Lecture: The Ketogenic Diet and Meeting the New Nutritionist, presented by Georgia Burlison, MS, RD, CDN, 6:30-8:00 PM, Alumni Hall B

March 5, 2018 – FACES Gala, 6:00 PM – 9:30 PM, Pier Sixty at Chelsea Piers

March 21, 2018 – Peace of Mind Lecture: Cannabidiol Update presented by Dan Friedman, MD, 6:30 – 8:00 PM

April 29, 2018 – Annual Epilepsy Conference, 8:30 AM – 3:00 PM, NYU Langone Health

October 4, 2018 – freshFACES, 6:30 PM – 9:30PM, Current at Chelsea Piers

October 13, 2018 – Game Day 2018, 2:00 – 4:30 PM, the Field House at Chelsea Piers

For questions about any of the above events, please contact facesinfo@nyumc.org or 646-558-0900.

3) FACES SCHOLARSHIPS

FACES College Scholarship Program Essay By Abigail Johnson

On September 23, 2016, I woke up

from a nap after a regular 6 a.m.

soccer practice. I always tried to

squeeze a short nap in before my

classes, but on this particular day,

that changed completely. When I

woke up, I didn't feel sick, but I

didn't feel right. My head felt heavy

and the light peering in from my

window really agitated my eyes.

When I sat up, I felt unusually

thirsty and thought that maybe I

was just dehydrated from the hard

practice I endured hours before. I stood up and began to reach under my

bed for a bottle of water when I started shaking. I could hear my startled

roommate say, "Abby, what's wrong?" I remember being scared and

wanting to cry but nothing happened. Silence.

Eight minutes later, I regained full consciousness and I was rolled

out of my dorm into an ambulance. After hours of testing, my

neurologist told my family and I that I have epilepsy as well as myclonic

seizures. This was a complete shock to me and my family because I was

always completely healthy with no signs of anything like epilepsy. Now I

have to take medicine every day, I can't take naps, I have to be careful

when I play soccer, and I always have to make sure that any medicine I

have to take won't interact with my epilepsy medication. I never knew

that something so quick could change my life so much. The most

frustrating part of my epilepsy is my myoclonic seizures. They occur

while I'm conscious and most often when I'm trying to concentrate in

class or work on homework. Also, being a soccer player at Fairmont

State University, I have to be very careful about using my head, so my

doctor recommended I wear headgear. Many changes had to be made

because of just one seizure.

My academics have always been my first priority since I can remember.

In high school, I was awarded The Principal's List Award every year. I

also entered a piece of at work in an art show at West Liberty University

and was recognized for that at the show. Coming into college I was

awarded the Promise and Beyond Scholarship and an Athletic

Scholarship from Fairmont State University. My first semester here at

Fairmont State, I was honored to be a part of the Dean's List as well. I am

studying biology and I hope to get accepted into the Pre Vet program here

and be able to continue my studies in veterinary school. This scholarship

would help me attain my academic goals. Being that I love animals and

plan to work with them for the rest of my life, I volunteer at two humane

societies; The Humane Society of the Ohio Valley in Marietta, OH and The

Marion County Humane Society in Fairmont, WV. I've always tried to help

my community to better my environment. In my home town, I rang the

Christmas bells for the Salvation Army, I ran summer soccer camps for

young kids, I helped raise money to build a new stadium for my high

school, and much more. In my town, helping the community is a big

deal and greatly appreciated.

Though I've only been a part of the epilepsy community for less than

a year, I understand how difficult it can be living with it. It really

changes lives. Because of how recent I was diagnosed, I have yet to find

many ways to help the epilepsy community other than sharing my story

and registering myself as a Participant on www.purpleday .org which is a

website dedicated to epilepsy awareness. I plan to use this website as

a resource for ideas of how to spread awareness and possibly sponsor

an event. I did discuss with my parents an idea of contacting my high

school and asking if I could speak to the student body regarding epilepsy

and sports.

Epilepsy not only changed my life, but has changed millions of lives.

This essay was written by a FACES College Scholarship recipient. FACES is proud to once again offer college and camp scholarships for 2018. The dates for the 2018 scholarships are as follows:

Dr. Blanca Vazquez Summer Camp Scholarship

Launch: February 12, 2018

Due: June 11, 2018

Winners to be notified: June 18, 2018

FACES College Scholarship

Launch: March 12, 2018

Due: May 14, 2018

Winners to be notified: May 21, 2018

4) AGED INVENTORY By: Michael Marriott

On Thursday, November 30th, FACES friend Michael Marriott performed with his band, Aged Inventory, at Le Poisson Rouge in Manhattan in a show to benefit FACES. With 320 guests in attendance, the event raised over $10,000! Michael’s daughter, Bailey took the stage and the crowd quieted down to learn about the organization’s mission. A fantastic and successful night raising awareness and funds!

5) JEA by Bella Charity By: Bella Reese

My name is Bella Reese and I am 16 years

old. I have had quite the journey with

epilepsy to bring me to this point! In August

2015 I had my first grand mal/tonic clonic

seizure. After a week of testing it was

determined that I was born with an abnormality in my left frontal lobe.

(polymicrogyria ) I present with 3 different seizure types. The medication I'm

taking works for 2 kinds but not the partial seizures (silent seizures). After

trying many medications it was determined that my partial seizures are

medication resistant and that's when I became a surgical candidate. I had 2

surgeries in the summer of 2016 in hopes of removing the focal point and

abnormal cells. During the first surgery I suffered a very serious

complication. The MRI scan showed that I had suffered a brain hemorrhage

from the depth electrodes. I had to stay in ICU for 19 days. It is a miracle that I

have recovered completely with no complications. The doctors were not able

to remove the abnormality because it was too close to the expressive language

part of my brain and the motor strip. In November 2017 I underwent my

third surgery in NYC with Dr. Doyle. He implanted a device known at the RNS

system. This is a new treatment for individuals that have medication resistant

partial seizures. I am extremely hopeful for my future and for the future of

others that qualify.

Throughout this experience I have realized how fortunate and blessed I

am. There have been so many people that have supported my family and I. I

just want to give back to other kids and families that may need some financial

assistance or support knowing that they are not alone! My mom and I have

always enjoyed doing crafts. We thought that selling some of our handmade

products would be a great start to giving back. Our charity is called JEA By

Bella. It stands for Juvenile Epilepsy

Awareness. We raise funds by selling

our products at craft fairs and online at

www.jeabybella.com. Our mission is to

also raise awareness and break down

stigmas associated with an epilepsy

diagnosis. To date we have made

donations to 4 beautiful families going

through epilepsy related surgeries and

treatments. We were also able to

donate to FACES. Not only do they

advocate for the best treatments and research for epilepsy, they also provide

housing supports, and resources to the entire family. We can say first hand

that the Neurology teams at NYU are the very best. We would like to directly

thank the FACES support staff along with Dr. Devinsky, Dr. Doyle, Alyson

Silverberg, and Erin Conway. Currently I am an athlete, high honor student,

friend, sister, daughter, and advocate. I hope to always give back and be a

voice for individuals living with epilepsy. We can support each other and live

very meaningful lives. We are in this together.

If you would like to become a member of the JEA community we have a

Facebook page and an Instagram page. These provide resources and a way for

individuals to connect and not feel alone. This is a safe site monitored directly

by Bella and her mother, Courtney Reese.

Website: www.JEAbybella.com

FB: JEA By Bella

IG: @juvenile_epilepsy_awareness

6) FUDGERAISERS By: Michelle Puglies

This year marked the 7th annual FUDGERAISER for FACES. Each year, during the month of November, a group of teens from northern New Jersey make, package and sell various flavors of fudge to family and friends to raise money for FACES. Luke Berninger and Drew Pugliese did an outstanding job heading up this year's FUDGERAISER but they couldn't have done it without the help of Drew's brother James, Luke's cousins, Max and Noel D'Amato and their friends, Jonathon and Mina Cocca. Once again, the FUDGERAISER was held in

honor of Luke's brother Eric who suffers from epilepsy and is a patient of Dr. Devinsky, as well as Drew and James' cousin, Joey, who also suffers from epilepsy. This year the team raised and donated $3000 to FACES. To date, the FUDGERAISER has donated over $18,000 to FACES. Kudos to all of them for their hard work and dedication! We are so proud of their amazing and incredible effort. They are already looking forward to FUDGERAISER 2018!

7) SHOES FOR A CAUSE Event chairs: Danielle Walker Michelle Brilliant Allyson Wiener Jackie Harris With FACES Executive Director, Pamela Mohr. Jackie Harris, along with event chairs (see names above) hosted the launch of Jimmy Choo’s 2018 cruise line in Jackie’s home on Thursday, November 30th. Guests received a 10% discount and 10% of all sales were donated back to FACES. Over $20,000 in contributions were received and more than $55,000 in shoes were sold!

From left: Danielle Walker, Michelle Brilliant, Allyson Wiener, Jackie Harris,

and FACES Executive Director, Pamela Mohr.

8) WILDLIFE WITH WATERCOLORS By: Nicole Pereira

Nicole is a 16

year old high school

student who has

always had a passion

for art and the

sciences. For the past

year, she has been

creating a series of

notecards that she has

hand painted using

watercolors. Through

her art, she hopes to

raise awareness of

brain disorders, such

as epilepsy and

seizures.

The idea for

Wildlife with

Watercolors originated

from just a hobby. She

had always loved art,

but it wasn’t until she

received a pack of

watercolor paints for

Christmas one year that

she really fell in love

with painting. She

became inspired to build

this hobby of hers into a

business when she saw how excited others were when they saw her artwork.

She was overwhelmed by the positive responses she received. This feedback

helped her to realize the potential in her artwork and led to the creation of

Wildlife with Watercolors by Nicole.

While having the ability to create Wildlife with Watercolor was an

amazing opportunity that Nicole was very enthusiastic about, she wanted her

art to have a bigger impact on the world. For the past 2 years, Nicole has also

been researching neuroscience through a science research course offered at

her high school. Through this program, she is able to conduct research

projects and participate in science fairs. Last year, her project focused on the

connections between autism and epilepsy, this year she will be studying the

effects of valproic acid on the neurodevelopment of different species.

Due to her background of researching epilepsy and seizures, she

wants to support efforts of any medical advancements that can be made in

this field. For this reason, she will be donating a percentage of her proceeds

from Wildlife with Watercolors to FACES.

For more information, visit WildlifeWithWatercolors.com

9) RECIPE OF THE MONTH

Coconut Clusters Cereal

Ingredients

7 oz unsweetened Coconut flakes (about 3 1/2 cups, the chunkier and

bigger the flakes, the better)

2 Tbsp grass fed butter or ghee

4 Tbsp granular sweetener (truvia

or swerve)

2 Tbsp cinnamon (optional)

Instructions

Preheat the oven to 350 F.

Place the coconut flakes in a large bowl.

In a saucepan, over medium heat, combine the butter, cinnamon, and

sweetener and heat until thoroughly incorporated.

Pour the sauce over the coconut and stir to coat

Spread the coconut onto a rimmed baking sheet.

Bake for 5-8 minutes, stirring and flipping the coconut every few

minutes so they don't burn. Be careful they burn quickly!

Optional: can add hemp seeds, flax seed meal and chia seeds as well

before baking. Can serve in unsweetened almond milk or as a topping

for heavy cream. Ask your dietitian to calculate some meals if you are on

the ketogenic diet.

Recipe Nutrition facts for ¼ cup as written: 11g of fat, 56 g of carbohydrates,

28 g of fiber, 28 net carbs, 1 g of protein.

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.

10) NOTEWORTHY NEWS

Top National Press Articles

1) I Tried Five Products to Stop Snoring and Some Kind of Worked