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OCTOBER/NOVEMBER 2017 FACES E-NEWSLETTER 1) PUTTING FOR PURPLE 2) RUNNING FOR FACES IN THE 2017 TCS NEW YORK CITY MARATHON 3) CHICAGO MARATHON 4) FACES GRANT 5) A NIGHT TO CELEBRATE: FRESH FACES 2017

6) GAME DAY 2017 WAS OUT OF THIS WORLD

7) FACES MARLBORO 8) GOLF FOR FACES EVENT 9) RECIPE OF THE MONTH 10) NOTEWORTHY NEWS

1) PUTTING FOR PURPLE BY: MELANIE HARMON

Our 4th annual Putting for Purple event

was a huge success! The dunk tank was the

place to be on this sunny, hot and happy

day. This year, we added an inflatable obstacle

course and that was a big hit, as well.

Emily is doing great and we are so thankful for

that. We are also grateful for the sponsorship of

the Roth family, who came to visit and had a

great time.

Donations are still coming in and we know we

have already exceeded our goal of $15,000!

2) RUNNING FOR FACES IN THE 2017 TCS NEW YORK CITY MARATHON

On Sunday, November 5th people from all over the world braved the cold New York

weather to run in the New York City Marathon. We would like to give a special thank you to

the FACES runners: Alain Bernard, Emily Merritt, Masha Ostojic, Richard Shane, Lena

Scunziano, Noel Simsiman, and Noam Oren. Together they have raised over $60,000 in

support of the FACES mission to help people and families living with epilepsy, through

research, education, and clinical and community support programs. Thank you!

3) CHICAGO MARATHON BY: GRACE HAUCK

It was an honor to run 26.2mi with my purple FACES shirt, and even more of a

motivator to see my entire family and best friend donning their green FACES shirts, running

from mile marker to mile marker to cheer me on. I only hope that the thousands of people

lining the barriers along the finish line glimpsed those five white letters and had a moment to

reflect on how hard it is to run a marathon and, moreover, how much, much harder it is to

battle epilepsy every single day, as I have seen my younger sister do for years. I look forward

to running for FACES again in the future.

4) FACES GRANT BY: HEATH PARDOE

A paper describing the outcomes of a FACES-funded study, "NAPR: a cloud-based framework for neuroanatomical age prediction" was recently published in the journal Neuroinformatics. This tool, provided online at https://cloudneuro.org/, allows researchers to estimate an individual's age using an MRI scan. A number of recent studies have suggested that "brain age" may be related to health outcomes in epilepsy and other neurological disorders. The use of cloud-based technology will allow researchers to adopt a 'big data' approach to brain age estimation, and will be a critical development for the translation of these research findings into clinically useful tools for epilepsy treatment.

5) A NIGHT TO CELEBRATE: FRESH FACES 2017 BY: ALEXANDRA NICKLAS

On Thursday, October 5th, 2017, FACES

held its 4th annual FreshFACES cocktail party at Current in Chelsea Pier 59. Patients, families and friends came together to be merry and celebrate the work of FACES including patient-care and cutting edge research on seizures and epilepsy prevention. Cocktails, light buffet dinner, DJ, photo booth, live auction and speakers made the night festive.

When guests arrived, FACES souvenirs (bracelets and eye glass cloths) were provided to get the spirit of the night going. Guests then found their friends and doctors to talk to while also making new friends! They shared stories of epilepsy with one another and spoke about their ties to this wonderful organization. Early on in the evening, I got introduced to the patient speaker, Dana Pirolli. We took photos with Dr. Devinsky and Executive Director, Pamela Mohr, and Dana talked about her experiences with epilepsy. Dana was an inspiring young woman, elated to be a part of the FACES community and to share her story!

While guests mingled with one another, guests were also having fun at the photo booth, browsing through the live auction items and reading statistics about epilepsy and seizures. At the photo booth, there were props available for people to make silly and fun pictures with. Live auction items included a Carnival Cruise vacation for two, Sushi Nakazawa dinner for two and a meet and greet with the Chainsmokers.

At 8:15PM, the program began. Chad Stark, the Event Chair welcomed and thanked everyone for coming. An auctioneer was present to help get the crowd energetic to bid on the live auction items. Dr. Devinsky spoke a few words and introduced Dana Pirolli to the podium. Dana spoke eloquently and her achievements with epilepsy shined through in her speech.

The evening ended on a high note. Guests enjoyed themselves thoroughly, they learned a young woman’s story about living with epilepsy and they helped raise large amounts of money. From the 270 guests in attendance, the evening raised $195,000. The 4th

annual FreshFACES event was a night to remember and a big success! I look forward to attending the one next year!

6) GAME DAY 2017 WAS OUT OF THIS WORLD! BY: BRIELLE CUMMINGS

On Saturday, October 21st over 350 families, friends, and volunteers joined us for

the 18th annual Game Day, held at the Field House at Chelsea Piers! Olympic medalist and

Game Day emcee, Chanda Gunn, kicked off the event with a few words of thanks to our

sponsors, followed by remarks from Dr. Devinsky, and then the fun began!

This year’s theme was outer space and the activities and attractions did not

disappoint. The rocket ship bounce house, space-themed carnival booth games, and photo

booth all brought guests to infinity and beyond. Crowd favorites were back, like the cookie

decorating station from Bonne Fete Baking and You Cake, Inc., the face painting station, the

micro racing track, as well as mainstays like the basketball and soccer free play, batting

cages, gymnastics, and toddler gym! And of course, it wouldn’t be a Game Day without

Sharon Perhac and her incredible Lollipop Game; this year’s prizes were some of the most

amazing yet!

New additions and attractions included

the Bear Factory station where each child

was able to make a teddy bear and design

their own t-shirt, and the roaming

magician who did up-close magic tricks.

Another new addition was the Passport

Game; children went around to activity

booths and received a sticker. Once they

got 5 stickers they were entered to win an

iPad Mini. Guests fueled up throughout the

day with tasty ketogenic treats from

Cambrooke Foods and VitaFlo, along with chicken fingers, hot dogs, and other carnival food

fare. Later in the day, the costume contest was in full swing and the top 3 winners received

Amazon gift cards! The day ended with a big finish; the Passport Game winner was called,

and a fun time was had by all!

This day wouldn’t have been possible without the incredible Sharon Perhac and her

many contributions, Chanda Gunn, and the tireless dedication of our volunteers. We would

also like to give special thanks to: Lundbeck, Inc., Eisai, Supernus Pharmaceuticals,

NeuroPace, Wells Fargo Advisors, UCB, and Novartis for their support and participation.

We can’t wait for next year!

7) FACES MARLBORO BY: JOAN POLKOWITZ

Marlboro teens formed a FACES club in town to raise money and awareness for

epilepsy and seizures. They have done numerous fundraisers and most recently went canning at a local bagel store. The kids always have a great time while raising money for this important cause. Their club was started by a sibling of one of Dr. Devinsky’s patients and her sister.

8) GOLF FOR FACES EVENT On Monday, September 25th over 120 golfers made their way to Trump National Golf

Club in Westchester for the

Golf for FACES event, hosted

by Fred Trump. The day

began bright and early with

breakfast and the start of the

silent auction, and then at 12

noon with a gunshot start,

they were off!

Throughout the day, golfers participated in contests such as the beat the pro

contest; winners won a credit to the club’s pro shop for top of the line golf gear! Golfers

also participated in the hole in one contest and the winner won a lease on a brand new

Mercedes! As the game drew to a close, the players made their way to the ballroom for

cocktails and dinner. Fred thanked everyone for attending and spoke around his

motivation behind creating the event.

“Ten years ago, our son William was stricken with a series of unexpectedly

horrifying episodes. We turned to NYU, thanks to unrelenting research by my wife, Lisa.

William was admitted under the care of Dr. Orrin Devinsky, who brought him from the

brink death over his 2-week stay through a medication regiment that has stabilized him.

We are honored to host this event and support the good work of FACES.” Dr. Devinsky then

made his remarks, followed by an extremely heartfelt speech by Dawn Clisham whose son

Patrick, is a patient of Dr. Daniel Miles at NYU Langone’s Comprehensive Epilepsy Center.

Howie Schwartz from Grandstand Sports then took the mic as the auctioneer. Prizes

ranged from the luxurious to the exotic; a stay at Trump National Golf Club in Doonbeg,

Ireland, an Andrea Bocelli VIP experience, and a trip to Bali!

Overall the event was a marvelous success with over $180,000 raised towards the

FACES mission. We would like to give special thanks to Fred and Lisa Trump, Bruce Orr,

Steven and Karen Shapiro, Josh Kuriloff, John Cefaly, Fundamental Advisors, Cathy and

Mark Weiss, NorthMarq Capital, RXR Realty, Robert Corroon, Pan & Grill Caterers, Elias

Group, HKS Inc., and Lift 23 for their incredible support.

9) RECIPE OF THE MONTH

Raspberry Chia Seed Pudding

Chia seeds are high in healthy fats as well as fiber to help keep hunger and constipation at

bay! This recipe yields 4 portions, each with 215 calories, 19.6g fat, 5.4g net carbs at a 2:1

ratio.

Ingredients:

1 cup canned coconut milk (full fat) ½ cup water 1 cup fresh or frozen raspberries (150g) 2 teaspoons coconut oil ½ cup whole chia seeds (76g) 2 teaspoon sugar free vanilla syrup (DaVinci Gourmet)

Instructions

1. Place the coconut milk, water, raspberries and coconut oil into a blender and pulse until blended; keep a few raspberries aside for topping

2. Mix the chia seeds, raspberry milk, vanilla 3. Let it sit for at least 25-30 minutes, ideally overnight in the refrigerator 4. Serve with the reserved raspberries 5. May store in the refrigerator for up to 3 days

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) Study Questions Mechanism Behind Transcranial Alternating-Current Stimulation

2) Daylight Savings Time Is Ending. Here Are Five Ways That Can Hurt Your Health

3) Modification of CLOCK Gene to Offer Potential Epilepsy Treatment

4) The Power of Sleep: How Shut-Eye Helps the Body As You Age

5) FDA Intends to Look Into Medical Marijuana Claims

6) NYU Langone Hospital-Brooklyn Opens Epilepsy Unit

7) Researchers One Step Closer to Detecting Brain Disease ‘CTE’ While Patients Are Still Alive

8) Engage Therapeutics Announces $23 Million Series A Financing to Advance Phase 2b Development of Novel Epileptic Seizure Rescue Therapy

9) Republican Senator Wants to Make Marijuana Easier to Study

10) NYU Langone Hospital-Brooklyn Opens Epilepsy Monitoring Unit

11) NYU Langone Hospital-Brooklyn Unveils New Unit Dedicated to Epilepsy Treatment

12) A Dedicated Epilepsy Unit Opens at NYU Langone Hospital

13) New York Today: Why Do We Yawn?

14) Marinus Announces Successful Clinical Trial Results and Declares CDKL5 Disorder Its Lead Pediatric Orphan Epilepsy Program for Ganaxolone

15) Eating in Synch with Your Body Clock May Help Curb Fat Gain