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HOLIDAY EDITION 2018 FACES E-NEWSLETTER

1) FRESHFACES RAISES OVER $250,000 2) GAME DAY 2018 WAS A SUPER SUCCESS 3) TEAMFACES RAISES A RECORD $137,000 4) STUDENT SPOTLIGHT BY: HEATHER HOLLAND 5) FACES BOARD TAKES A TOUR OF THE KIMMEL PAVILION 6) SUMMER CAMP FUN WITH KYANN BROWN AND SOPHIE HOFFMAN 7) MEENA MEETS HER MATCH – A NEW BOOK FOR CHILDREN WITH

EPILEPSY 8) BRODSKY BOUTIQUE TO BENEFIT FACES 9) FUDGERAISERS 10) LIFE AFTER EPILEPSY BY: ANGELA SIEFERT 11) SAMANTHA MACK’S GIRL SCOUT PROJECT 12) A LOT ON THE MIND BY: STEPHANIE ROGERS 13) PURPLE SPOON 14) NOTEWORTHY NEWS

1) FRESHFACES RAISES OVER $250,000

Nearly 300 guests filled Current at Chelsea Piers on October 24, 2018, as FACES hosted its fifth annual freshFACES event, raising more than $250,000! It was a beautiful fall evening as guests were treated to a wonderful buffet dinner, partnered with cocktails, music, and entertainment. The night featured a short program, including a welcome from FACES founder Dr. Orrin Devinsky. His remarks acknowledged the efforts of our donors, committee, volunteers and staff and highlighted the importance of spreading awareness for epilepsy and seizures. It was an extra special night for Chad Stark – event chair - as he was joined on stage by his sister, Skylar – who was one of our patient speakers. Alexandra Nicklas and Maurice Toueg also graced the stage as they shared their own journey. Ending the program was an exciting live auction and live pledge led by Chad! Guests won great experiences such as: dinner at Sushi Nakazawa, a Carnival cruise, and a DVF shopping experience! Everyone’s generosity and efforts resulted in another very successful freshFACES event! Mark your calendars for freshFACES 2019, Wednesday, October 16, 2019 – Current at Chelsea Piers. For more information, visit our website at http://faces.med.nyu.edu/events-programs/freshfaces. To see more photos from the night, http://faces.med.nyu.edu/events-programs/freshfaces/freshfaces-photo-gallery.

2) GAME DAY 2018 WAS A SUPER SUCCESS

On Saturday, October 13, nearly 400 patients, parents, volunteers, and staff arrived at the Field House at Chelsea Pier for the 19th annual FACES Game Day! The theme this year was superheroes and a SUPER time was had by all. Guests met on the blustery day and were greeted by a crew of happy volunteers and an incredible balloon arch, setting the scene for the activities to come. At 2:00, FACES friend, Olympian, and emcee, Chanda Gunn, took the stage to thank our sponsors and all those in attendance. She then invited Dr. Devinsky to say a few words of thanks, and then the day began! Children and adults alike were excited to see some of the old favorites such as the cookie decorating station, with all cookies graciously donated by Bonne Fete Baking, and of course the Lollipop Game! This year’s Lollipop Game was bigger and better than ever with some incredible prizes like a

remote control drone with 720 pixel camera and live video, a Harry Potter Great Hall Lego building set, and an electronic keyboard piano with stand, stool, headphones, and microphone to name a few. Guests were also wowed by new attractions and activities like the Giant Slide, cape and mask decorating stations, and incredible bounce house! They excitedly visited every

attraction and activity to fill up their passports, vying for a chance to win an iPad mini. Soon it was time for another Game Day classic, the costume contest! Crowd favorites included a child dressed as bacon and eggs, another dressed as Gumby, and a duo of blue and green M&Ms. As the day started to wind down, patients and their families had fun getting their faces painted and enjoying the amazing magic tricks of Marshall Herman. The day ended with all those who filled out their passports anxiously awaited the winner of the iPad mini to be called, and many people left saying this was the best Game Day yet!

FACES would like to give a very special thank you to: Ronald McDonald House Charities Lundbeck, Supernus, UCB, Greenwich Biosciences, Eisai, Neuropace, Novartis, and Sunovion for their amazing support, as well as Sharon Perhac for her guidance and generosity. Make sure to save the date for next year’s Game Day: October 26, 2019!

3) TEAMFACES RAISES A RECORD $137,000

On Sunday, November 4th 11 athletes gathered at the western end of the Verrazano

Bridge in Staten Island for the New York City Marathon, all with the goal of finishing 26.2 miles to fundraise for FACES. FACES staff, Frances Salvo, Luis Valero, Peggy Guinnessey, and FACES founder, Dr. Devinsky braved the crowds to cheer them on and for good reason; this year the FACES runners raised over $137,000, the most raised yet for TeamFACES to date since its inception in 2013!

Thank you to all of our runners: Jaime Santa, Shawna Wanemacher Camilleri, Derek Fein,

Alain Bernard, Antoine Bernard, Craig Berendowski, Richard Shane, Maja Maša Lana Ostojic, Heather Colamussi, David Farkas, and Katherine Walker for your incredible

dedication. To all those who supported our athletes, many thanks!

4) STUDENT SPOTLIGHT – HEATHER HOLLAND

Each year, the FACES College Scholarship provides partial financial assistance to students with epilepsy to use towards their higher education. Below is a personal statement of one of the recipients.

As a child, I always felt different; always feeling like I was by myself and never a part of anything. At the age of three I had my first seizure, and a month later I had a second one. I was diagnosed with epilepsy at the age of four and began taking anti-seizure medicine. My parents and I participated in epilepsy awareness programs at Children’s Hospital of Birmingham by attending training classes and events. We continue to view various online resources and newsletters, such as the Epilepsy Foundation and Epilepsy

Foundation of Alabama, to gain more education as it relates to epilepsy and seizures. My famiy and I have educated my caregivers, friends, and family members. In addition, my family members have made donations to help change lives for the better and support the National Epilepsy Awareness Month by wearing purple to help raise awareness. By the time I started school and up until 3rd grade I struggled with reading, multiplication, and spelling. I also had trouble focusing in school. I would come home at night and study for hours with my parents and still would not get it and end up crying myself to sleep because I was so upset. In 4th grade, I started my IEP program and began taking medicine to help me focus. I finally started to get it! In 8th grade, I started using a program called Quizlet to help me study for tests which made a big difference in my grades. My confidence level started to improve because I felt better about my school work and

myself. In high school, I am now to the point where I don’t need accommodations nearly as often. I have developed good study skills that have allowed me to learn in ways that work for me. I went from needing help every day to now being an independent learner with only occasional assistance. Ever since I was 6 years old I have wanted to be a teacher. There is just something so wonderful about giving children knowledge to children in dance class or vacation bible school and watching their faces light up when they realize they just got it! I have worked with several age groups but I especially love working with 3 to 5 year olds. Now after

having taught this age group in dance and vacation bible school for a few years, I am

certain. Even though it can be like herding cats sometimes, this is still the age group that gives me the most joy to work with. I am looking forward to one day having my own classroom to decorate and young minds to fill with knowledge. My goal now is to go to college, major in Early Childhood Education, and fulfill my dream I have had since I was a kid. At my high school, I worked in the Exceptional Education Department as a teacher’s aide teaching core subjects and life skills to self-contained and multi-disabled students. I also volunteered to help with Special Olympics Unified Bowling, Prom, and Jingle Bell Rock which were events for special needs students. I am also considering working with special needs children, especially children with learning disabilities. With my own early struggles with a learning disability, I feel I am well-qualified to work with these types of kids. The

challenges of both learning as a child with learning disabilities and teaching one are unique, but learning and excelling is still very possible. I am proof!

I am honored to receive this scholarship to help fulfill my dream I have had for as long as I can remember, to become a teacher. I am hopeful that I will have a life-long positive impact on the kids that I will teach throughout my career. I look forward to seeing them grow and I hope that one day I will be teaching my children’s children. My goal is to go to college and major in Early Childhood Education and fulfill my dream I have had since I was a kid. I intend to get my Master’s degree in Early Childhood Education. I am certain that there will always be new techniques and materials, so I plan to make sure I am always as ready as possible to teach and create a happy and creative environment for learning. While in college, I hope to teach at a local dance studio, volunteer at a daycare or school, or anything that involve kids and/or kids with epilepsy or other

disabilities.

5) FACES BOARD TAKES A TOUR OF THE KIMMEL PAVILION

On Thursday, October 18th, FACES Advisory Board members Stewart Karger,

Michael Weisberg, Angela Howard, Katie Boehly, Joe Walsh, Larry Davis, Robert Hougie, David Swinghamer, Kate Picco, and Dr. Devinsky along with FACES executive director, Pamela Mohr and Parent Network coordinator, Peggy Guinnessey received an exclusive tour of the new Kimmel Pavilion and Hassenfeld Children’s Hospital, led by Lisa Kesting, director of hospital operations project management at NYU Langone Health. All of the rooms are single-patient, and equipped with the latest technology. The board was beyond impressed with the incredible facility. It was an amazing experience for all.

6) SUMMER CAMP FUN WITH KYANN BROWN AND SOPHIE HOFFMAN

Each year, FACES provides partial financial assistance to children with epilepsy to attend the summer camp of their choice via the Dr. Blanca Vazquez Summer Camp Scholarship. Below is a thank you letter from the mothers of two of the recipients:

My daughter, Kyann Brown, had a great time at Children’s Hospital’s Camp Great Rock this

past summer. As you can see from the look on her face, she truly enjoyed the day of fishing! In fact, she enjoyed her entire week at the camp because it gave her an opportunity to interact and speak openly with and learn from other young people who are living with epilepsy. This experience contributes to positive self-esteem and a true sense of accomplishment for my daughter. She has maintained several of these friendships through the following months and hopes to return to camp next year. My family is very appreciative for this scholarship and your commitment to improving the lives of young people living with epilepsy.

_______________________________________________________ I have attached some pictures that I took during parent

visiting day. Sophie was in sports, art, and drama/music. Her favorite part of camp, I would

say, is getting to spend time with counselors and friends in a relaxed atmosphere. Thank you again, Phyllis Hoffman

7) MEENA MEETS HER MATCH – A NEW BOOK FOR CHILDREN WITH EPILEPSY

MEENA MEETS HER MATCH A novel for children ages 8 to 12 by Karla Manternach (Simon & Schuster Books for Young Readers, January 2019) “Meena is a girl whose personality bursts off the page. She is a high-energy mischief-maker with a secret stash of glue at the ready for pranks, a creative whiz who forages for trash to repurpose into art, and an insatiable competitor who seeks to turn every class assignment into a contest. She is also a girl who protects herself from blah days by collecting colors in everything she sees, does, and eats. Lately, however, those protective colors cannot defend against the hurt Meena feels by the distancing of her best friend. Even worse, when Meena suddenly has bouts of confusion, dizziness, and uncontrollable twitches, she begins a series of bewildering and frightening medical tests—and she must endure the sudden hovering of her concerned parents… Because the author’s daughter had epilepsy as a child, she brings authenticity to Meena’s intense physical and emotional turmoil. Meena’s story will have strong appeal to those who have personal experience with epilepsy and will educate those who know nothing about it. The Author’s Note explains epilepsy and offers websites for those who would like additional information.” —School Library Connection You can buy MEENA MEETS HER MATCH wherever books are sold. It is available for preorder and hits shelves on January 29th.

8) BRODSKY BOUTIQUE TO BENEFIT FACES

Friends gathered at the Brodsky residence in Sands Point on Sunday November 18th

for a holiday shopping boutique to benefit FACES. They raised over $7,000 in support of the organization and had a fantastic turnout! It was a fun-filled day and they can’t wait to do it again next year.

9) FUDGERAISERS

Luke Berninger, Noelle D’Amato, Drew and James Pugliese and Jonathan Cocca held their annual FUDGERAISER for FACES in November. We are excited to announce that in its eighth year, the FUDGERAISER raised $2,250.00, making our grand FUDGERAISER total over $20,000! This year was especially meaningful as the kids dedicated their efforts in loving memory of Luke’s brother, Eric Berninger. Eric was the original inspiration for the FUDGERAISER and the crew will continue to raise money in his memory and for all those who deal with the effects of epilepsy.

10) LIFE AFTER EPILEPSY BY: ANGELA SIEFERT

At age 24 I had my first grand-mal seizure. I vividly remember re-entering cognizance with the voice of the EMT saying "you just had a seizure.” My first thought was that my life was going to change. Within just a few days, I was diagnosed with a focal onset impaired awareness epilepsy caused by a rare epidermoid tumor inhabiting my left hippocampus. From that moment on, my life did change.

I walked into a reality in life that I never expected during these the past four years. Epilepsy was a selfish enemy that followed me around everywhere. It stole my attention. I worked infinitely harder at my job on Wall Street than most others and struggled with feelings of jealousy. Experiencing déjà vu, voices, and out of body experiences during a seizure didn’t feel like real life. Playing defense every day yet losing the battle of the pre-seizure aura kept pushing me forward to find a next step.

For four years I visited medical

teams across the country. I experimented with various medications, their dosages and side effects, and in 2017 underwent an invasive brain surgery. In 2018 I met a pioneering epileptologist at NYU Langone Health. Dr. Friedman started me on a medication regimen. This approach helped me stay grounded rather than experience seizures on a daily basis. His treatment helped reduce the number of seizures to about 2 a week. Dr. Friedman also brought my case to a surgery conference which caught Dr. Doyle’s interest.

I have been seizure free since the day I woke up post-surgery with Dr. Doyle in September 2018. He didn’t start a new chapter in my life, Dr. Doyle started a new book in my life.

Now that I am seizure free, emotions for other aspects of my life have returned, and my jealousy of others is gone. I always thought I would have seizures for the rest of my life. Having the surgery at NYU cleared away the doubts and sadness of what my life could have been without surgery at NYU. I am beyond grateful and am in a directive spot in the world.

Of all the stories I read, I wonder why I was cured. The question pre-surgery was “why me” for having epilepsy, now it’s “why me” for being cured. I didn’t think I could beat the controlling epilepsy voice, and now I am extremely motivated to help others overcome the arduous struggle. I founded a non-profit, Bridge to Cure, and raised $38,000 at our first event. I am also inspired to transition my career into healthcare finance in order to help others find the success that I did.

Now rather than waking up every morning and having the seizure voice follow me around all day, I wake up to my real voice and feeling grateful for Dr. Friedman, Dr. Doyle, Alyson Silverberg, N.P, Dr. Pillai, Dr. Nadkarni and everyone else at NYU who have changed my life and inspired me to help others.

11) SAMANTHA MACK’S GIRL SCOUT PROJECT

Over the summer, Samantha Mack completed her Silver award for Somers Girl Scouts to raise epilepsy awareness.

“My Silver Award was about bringing awareness on epilepsy to all my friends, family members and community. My project was very personal for me because I have epilepsy and I was never able to talk about this to anyone, not even family. I educated many people through my workshop and pamphlet about epilepsy. During my workshops whoever was attending during that time were able to make this fun and make gift bags for the NYU Epilepsy Center. It made me feel good knowing I would make another girl or boy smile after their visit when they were not sure what was going on with them. I hope this will make the children feel they are not alone.”

12) A LOT ON THE MIND BY: STEPHANIE ROGERS On November 28, 2018 BraiNY launched a new outreach series in conjunction with

Caveat in the Lower East Side. The new series, titled A Lot on the Mind, is a set of shows that aims to demystify some of the most misunderstood neurological disorders in a casual, but informative setting. The inaugural show focused on epilepsy, and with an ensemble of charismatic presenters, attendees were guided through a clinical description of epilepsy, the latest understanding of how cannabidiol (CBD) is working in the brain to help epilepsy patients, and a poetry reading from the original works of Alyssa D’Amico sharing what life is like living with the stigmas of epilepsy. Attendees learned how to recognize different types of seizures, from absence to complex partials to convulsions, what happens in the brain during a seizure, then participating in a workshop to hone their proper first-aid skills. The event was extremely well received with many audience members remaining after the show to talk with the presenters, Stephanie Rogers, Dr. Simon Chamberland, and Alyssa D’Amico. A Lot on the Mind was created and produced by Stephanie Rogers, a PhD candidate in neuroscience at NYU. The next show, on January 9th, will focus on autism. A recording of the show will available on YouTube following the holidays.

13) PURPLE SPOON

Cauliflower Mash Side Dish – recipe adapted from the Charlie Foundation Ingredients:

1 large cauliflower

1 small white onion

2 cloves garlic

8 Tablespoons ghee or butter

½ tsp salt or more to taste

Freshly ground black pepper

Instructions Cut the cauliflower into florets and place on a steam rack inside a pot with 2 inches

of water. Bring to a boil and cook for ~10 minutes or until cauliflower is soft.

Heat a pan, greased with 2 Tablespoons of ghee or butter; add chopped onion and

garlic and cook until browned. Continue to stir to avoid burning.

Place the cooked cauliflower in a blender; add the cooked onion/garlic and add the

remaining ghee or butter. Season with salt and pepper. Blend until smooth and

creamy.

This entire recipe is ~1100 calories, 99.5g fat, 35.2g net carbs at a 2:1 ratio. Please contact your dietitian to adjust the recipe for you or your child’s ketogenic diet.

14) NOTEWORTHY NEWS

1) Benefits of CBD for Epilepsy Fades in One-Third of Patients 2) First Report from North American SUDEP Registry Presented 3) Seizure Risk in Pregnancy Highest With Frontal Lobe Epilepsy 4) What’s the Legal Status of CBD After the Midterms? 5) GW Pharmaceuticals: First FDA-Approved Cannabis-Based Drug Now

Available In the U.S. 6) First U.S. Drug Containing Marijuana-Derived Ingredient Goes On Sale