December 2016 / January 2017

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DECEMBER 2016 / JANUARY 2017 FACES E-NEWSLETTER

  1. NEVER GIVE UP HOPE
  2. LET’S TALK ABOUT EPILEPSY BROOKLYN!
  3. DEAR ROSIE
  4. DEDICATION COMEDY NIGHT
  5. FRESH FACES
  6. FUDGERAISER
  7. RUNWAY OF DREAMS
  8. ZOOBIQUITY
  9. TIS THE SEASON
  10. MARATHON
  11. GAME DAY
  12. NEW STAFF
  13. RECEIPE OF THE MONTH
  14. NOTE WORTHY NEWS

1) NEVER GIVE UP HOPE

Dr. Devinsky and Mac Levy will never give up hope…hope to find a cure and the best quality of life for those living with epilepsy

2) LET’S TALK ABOUT EPILEPSY BROOKLYN!

LET’S TALK ABOUT EPILEPSY, BROOKLYN! was held on Friday, November 4th at Brooklyn’s Borough Hall to increase awareness, enhance healthcare options, provide critical resources/information on current technologies, honor a Brooklyn-based leader in patient care for epilepsy, seizures and neuro-critical health, and honor a community advocate/volunteer in the fight against epilepsy. The event featured The Epilepsy Foundation of Metropolitan New York (EFMNY) Executive Director, Pamela Conford, MSW, and a group of esteemed panelists: Dr. Shahin Nouri, Director, Comprehensive Epilepsy Center of New York Methodist Hospital; Dr. Arthur Grant, Director, Comprehensive Epilepsy of SUNY Downstate Medical Center and Dr. Blanca Vázquez of NYU Lutheran Hospital. Dr. Dan Miles of NYU Lutheran, Dr. Romaine Schubert of NY Methodist and Dr. B. Oyinkan Marquis of SUNY were presenters for the children and epilepsy panel. Brooklyn Borough President Eric L Adams was the co- sponsor.

The event was highly successful in bringing together a wide range of stakeholders from various segments/ schools, parents, municipal services, government, business and primary care practitioners.

Over 100 people were in attendance and the event increased initial communications with the Brooklyn Borough, thanks to the vision and leadership of Brooklyn Community Leader Pat Williams and EFMNY Executive Director Pamela Conford, MSW.

3) DEAR ROSIE

I was seizure free for over a year after my brain surgery and things were looking up. However I just had an unexpected grand mal and am freaking out. What do you do when you think everything is all fixed and it’s not?

First- Take a breath. Everything will be okay.

I know how you feel. Your seizures had subsided, you’ve healed up from surgery, maybe your meds were starting to be lowered and life was becoming manageable with exciting prospects on the horizon. And then BAM, you didn’t even recognize your aura and you find yourself on the floor; dazed and confused.

Okay maybe it was not exactly like that, but still, I’ve been there and can relate. And honestly, almost everyone that I’ve meet over the years that have epilepsy will likely have a similar story.

While brain surgery or the particular combination of medicines can do wonders for people with epilepsy- it is not the end of our story. This can be hard to believe and eventually accept. Especially if you are like me and avoid diving into all of the studies, articles and general science behind the facts making this clear.

That being said, do not stress out that having this one seizure means that you have to start over again from the beginning. As your doctor will tell you, sometimes these things just happen. Folks can go for years without an episode and then one happens unexpectedly. And again, I’m not a doctor, but often there are a handful of factors that can cause this: lack of sleep, too much work and stress, forgetting to eat and/or take the right amount of meds at the appropriate time. Mix that in with a bit of alcohol and it is the perfect combination for our unwanted epilepsy to burst back into our lives. Unfortunate as that sounds, reality is that we have to care of ourselves a bit more than the average person because stressing our body and pushing the limits does have consequences beyond being tired or hung-over.

So when you ask what to do when you think “everything is fixed and it’s not”; my suggestion would be to see it differently. Our brains are powerful and resilient. If you look at them like an engine, they may “misfire” every now and then and need some maintenance, but it does not mean that they cannot still fully function, regardless if some parts have been removed ;)

-Rosie

Dear Rosie’ is a monthly contributor to our newsletter. She is interested in hearing from the community and would be happy to answer any non-medical related questions that you may have. Email facesinfo@nyumc.org with your questions or suggestions.

4) DEDICATION COMEDY NIGHT

By: Eric Acerno

Eric Acerno first attended the freshFACES fundraiser event back in the fall of 2015. He was invited by a close family friend, Julia Buldo–Licciardi, a FACES volunteer, Steering Committee member and one of the founders of freshFACES.

Joseph, Julia’s late brother and a best friend of Eric, had passed from an epileptic-related event back in 2003 when they were just 13 years old. It was tragic and left the Buldo-Licciardi family and Joey's closest friends wishing there was something they could have done. The grieving process was difficult, but eventually the people affected healed with Joey always in their memories.

(from left to right) Jeff Kissler, Eric Acerno,
Matt Fullam, Jesse Eigner - Matt Fullam
and Jeff Kissler

Eric was actively involved in the comedy community in New York City and Julia thought they should incorporate a comedic element to freshFACES in the future. Eric told Julia he had his own idea to produce a comedy show for charity but he did not have a formal plan of execution or a charity of choice. Together, they decided that this would be the perfect way to honor Joey Buldo-Liccardi and raise awareness and funds for FACES. Eric spent the following spring putting a plan in motion to produce a show benefiting FACES in Joey’s honor. It only made sense to name the show “The Dedication” as a tribute to Joey and all the laughs he had shared with his late friend through the years. Finally, Eric had a chance to do his part by raising money to help people with epilepsy improve their lifestyle, and ultimately find a cure.

Eric brought along his good friends Eric Goldstein and Jesse Eigner to help execute the event. Eric Goldstein has a background in event planning and Jesse Eigner is a rising comedian with connections to the industry in the New York area. Their hard work culminated in the “The Dedication” that took place at the Metropolitan Room in Chelsea on October 29, 2016. They sold out the venue with 115 people in attendance and raised over $3,000 in net proceeds to FACES. Eric has stated, “Due to the event’s success, we hope to do it bigger and better next year. Look out for the “Dedication 2” in fall 2017!”

5) FRESH FACES

By: Chad Stark

This year marked the 3rd time that I have helped organize the freshFACES fundraiser as a way for the FACES organization to reach a new, younger audience. Each year that I’ve been involved, my responsibilities have grown and fortunately so has the money raised! We have grown almost 100% each year – from $50k the first year to $100k the second and $235k the 3rd! It is truly incredible to see the support my friends, colleagues, and design industry associates have shown for a charity that there are only connected to through my family. The momentum and excitement from the event is still being felt!

The event was as fun as ever! The music was good, food was delicious, and the auction was lively! We learn what works best each year so that we can improve attendees’ event experience for the next event.

A key to the event’s success has been the involvement of our planning committee, whose main function is to find donated auction items, promote ticket sales, and sell sponsorships. This year the committee was larger and more engaged than last year. Having such a dedicated group makes organizing the event a pleasure.

While having been unofficial event chair in the past, I was honored and humbled when Dr. Devinsky asked me to be the OFFICIAL event chair for freshFACES moving forward. Making this organization a greater part of my life is very exciting and I look forward to see how my involved will evolve in 2017!

As I said last year, the future is bright for our freshFACES event series and with Dr. Orin Devinsky’s leadership, my friends and I are confident that we WILL find a cure for epilepsy and seizures. Until Next Year!

6) FUDGERAISER

Drew Pugliese and Luke Berninger did a fantastic job heading up this year's FUDGERAISER, raising $2570 for FACES. They couldn't have done it without the help of Drew's brother, James, Luke's cousin, Max D'Amato and their friend, Jonathon Cocca. The team made, packaged and sold various flavors of fudge to family and friends. Once again, the FUDGERAISER was run 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. We are incredibly proud of their hard work. The boys look forward to the FUDGERAISER every year and have a great time doing it! This year marked the 6th year of the FUDERAISER and over $15,000 being donated to FACES. We are incredibly proud of their hard work.

7) RUNWAY OF DREAMS

By: Mindy Scheier

I am the mother to three beautiful children. My middle son Oliver was born with a rare form of muscular dystrophy, which causes weakness and low muscle mass. Oliver’s disability makes many of life’s daily tasks challenging, like getting dressed in the morning. It breaks my heart to watch my son struggle with a zipper or button, and as he gets older, his independence become increasingly important to him.

Though now in sixth grade, Oliver began noticing how his friends and classmates were dressing when he was only eight. He came to me after school and asked if he could wear jeans instead of the sweatpants he usually wore. I never wanted Oliver’s disability to compromise his confidence or self-expression, so I used my background as a fashion designer to create a pair of jeans with adapted closures and easy to maneuver openings.

Seeing how empowering a pair of adaptive jeans could be for my son made me realize there was an opportunity to create adaptive clothing for the millions of other people in the differently abled community who have been largely ignored by the fashion industry. From that realization, Runway of Dreams, an organization that works closely with retailers to create brand-name adaptive clothing for the differently-abled community, was born.

After several years of market research and focus groups to understand the varying challenges, style preferences and dressing routines of people in the differently abled community, Runway of Dreams developed a set of adaptive designs that can be easily incorporated into mainstream brands. This year, we partnered with Tommy Hilfiger on an adaptive version of their iconic children’s line, marking the first time a major retailer sold an adaptive version of an existing collection.

I am so proud of Runway of Dreams and what we’ve accomplished, and I owe so much of our success to the differently-abled community. Through our Runway of Dreams focus groups, I have had the honor to meet so many incredible kids, parents and caretakers who have shared not only their unique clothing challenges, but their personal stories. Every disability is different, but everyone I have met since launching Runway of Dreams shares a bond rooted in love and resiliency. My heart is warm because of the love from our community.

As Runway of Dreams develops future partnerships and clothing lines, we will continue to look to the differently-abled community for feedback on style preferences, fit and comfort. We are constantly looking for ways to improve and develop designs that accommodate all needs, so that every person with a disability can wear and shop for the clothing brands they want.

I invite everyone reading this to write us with ideas, join our focus groups and share their stories. We would not be where we are today without the support of the community, a community that needs to continue to grow and rise together if we are going to realize our mission to make fashion accessible for all people, regardless of ability, age or socioeconomic background.

8) ZOOBIQUITY

Medical Powerhouses Join Forces in New York City to Collaborate on Human and Animal Brain and Behavioral Disorders

On October 21, 2016, NYU Langone Medical Center brought together over 150 of the nation’s leading physicians, veterinarians and researchers in neurological and behavioral disorders to foster conversations and collaborations about medical conditions affecting both people and non-human animals at the Zoobiquity Neurology and Psychiatry Conference. Co-directed by Dr. Orrin Devinsky, Professor of Neurology, Neurosurgery and Psychiatry at NYU School of Medicine and Director of NYU Langone’s Comprehensive Epilepsy Center, the conference featured case studies and cutting-edge research on the most high-impact brain-related disorders that affect animal species including humans.

Renowned clinicians and educators from both human and veterinary medicine presented intriguing cases including:

  • Seizure prediction in humans and dogs;
  • Anxiety and compulsions in human, feline and canine patients;
  • Cognitive decline in people and animals;
  • The autism phenotype in people and mice;
  • Pain in humans and animals;
  • Learning and language acquisition in students, songbirds and parrots.

Dr. Devinsky stated, “This conference was the first of its kind - a collaboration of doctors who care for animals and humans sharing their insights on neurological and psychiatric disorders. The group included luminaries in both the medical and veterinarian worlds, but also some of the world’s leading scientists on human evolution, neuroscience, and behavior. I have never been more excited to attend a conference that I have organized.” This collaborative program is co-sponsored by NYU Langone Medical Center, Cornell University College of Veterinary Medicine, and Evolutionary Medicine Program at UCLA.

Featured speakers included Dr. Martin Samuels, Chief of Neurology and Professor at Harvard Medical School and Brigham and Women’s Hospital; Dr. Fred Volkmar, Chief of Child Psychiatry and Professor at the Yale University School of Medicine; Dr. Brian Hainline, Chief Medical Officer at the NCAA and Clinical Professor of Neurology at NYU School of Medicine, and Dr. Gary Small from the UCLA Longevity Center. They were joined by veterinary leaders such as Dr. Katherine Houpt and Dr. Sofia Cerda-Gonzalez at the Cornell University College of Veterinary Medicine, and Dr. Charles Vite from the School of Veterinary Medicine at University of Pennsylvania, among others. “Humans and other animals are linked by the nervous system, which creates that elusive concept known as consciousness. Knowing more about the neurology of animals teaches more about ourselves,” said Dr. Samuels. Dr. Hainline comments, “There are so many unsolved puzzles in human medicine – especially pain – and I am eager to learn from and share with our veterinary colleagues so we can problem-solve together.”

9) TIS THE SEASON By: Alexandra Nicklas

It is that time of year…the holidays! We reflect, celebrate, reminisce on old memories and create new ones. The holidays are marked by parties, lavish dinners, participating in religious rituals among other events with friends and family. People drink to be merry, stay up into the late hours of the night and eat lots of food. While this sounds grand, individuals with epilepsy have to manage their involvement with these festivities. This could manifest in drinking less alcohol or none at all, going to bed earlier and limiting the amount and types of food eaten. Individuals often feel “different” then others and their medical restrictions take an emotional toll, including feelings of loneliness, anger and sadness. These emotions can override the joy of the holidays.

Not taking care of their epilepsy during a holiday event is something that I have witnessed. It was last year on Halloween night. My friend Valentine and I were dressed up, going to a pre-Halloween party before hitting the bars (club soda with cranberry juice for me who does not drink!). The host lived in a loft-style apartment in SoHo. She served specialty cocktails and nibbles. There were 20 close friends mingling and having fun dressed in costumes. The gathering took place in the living room. Among the guests was an estranged friend of the host who appeared to be an oddball in the crowd. She disappeared alone into the master bedroom. Twenty minutes into the party, this estranged friend joined the guests in the living room. Once in the living room, she lost consciousness. She had a seizure. The seizure was scary to witness, especially to those not understanding epilepsy or having witnessed a seizure before. Valentine and I wanted to call 911. However, the young woman’s boyfriend was a doctor and said he knew how to handle her condition. I left the party. While I was sympathetic and I felt bad for her, I was angry at myself for not calling 911, and felt that I did not do the right thing. According to the host, minutes later, she became conscious and was ok. What made her have this seizure? I can only speculate but imagine it had something to do with the activities going on at the party.

To avoid situations like this one, individuals with epilepsy need to take care of themselves. They should make sure to take their medication daily, be in close contact with their doctors and be conscientious of their daily activity. It would also be helpful to talk with family and friends about their condition, fears and limitations. This can greatly ease anxiety and inform others what actions should be taken in case a seizure occurs. Staying proactive with one’s epilepsy can increase happiness and enjoyment. Why sacrifice enjoying the holidays by not being open and managing your epilepsy? I am always told that life is too short to miss out on the fun. Therefore, my advice this holiday season is to take care of your epilepsy and have fun with the festivities!

10) MARATHON

13 TeamFACES athletes laced up their sneakers and pounded the pavement to raise over $90,000 in the 2016 NYC TCS Marathon on Sunday, November 6th. We are so proud of their efforts! If you are interested in running the NYC marathon or half marathon in support of FACES, please do not hesitate to email Frances Salvo at – frances.salvo@nyumc.org.

11) GAME DAY

By: Sharon Perhac

There is nothing my family and I look forward to more than FACES Game Day. As the inspiration for the event and the creators of the Lollipop Game, we are blessed to talk to each and every child as they dream about winning the Black Diamond prize. October 22nd marked the 17th year of bringing smiles to hundreds of children with the theme of “It’s A Jungle Out There.” It was a perfect backdrop for all the fun filled activities including inflatables, carnival games, cookie decorating, spin-art, face painters, balloon artists, a costume contest and a magic show just to name a few.

Being part of this event from the very beginning has been an amazing honor for my family. There is nothing more rewarding than to see all the parents and children with epilepsy and their siblings enjoying every moment of Game Day as if nothing else in the world mattered. Game Day is all about doing anything and not let epilepsy stand in your way.

This year, in particular, was very special for my family. We had the pleasure of having an extraordinary young man, Tom Porter, as our new FACES volunteer to help us with the Lollipop Game. As children anxiously waited in line for their chance at a big prize, Tom greeted each of them with his enormous smile and then patiently collected their tickets.

He will be in our hearts forever.

12) NEW STAFF

We have some exciting news! FACES is officially fully staffed! We are pleased to announce 2 new hires and their details are below.

Frances Salvo, Event Manager (taking over for Marisa Maltese)
Frances comes to us from Saint Peter’s Preparatory in Jersey City where she was the special events director for the past five years. She managed and executed several events, and auctions including major fundraisers. Frances’s main event was the school’s largest fundraiser, the annual Grand Gala, which benefited the financial aid program. During her first year, they broke record by raising the highest Gala income to date at $470k. Frances graduated from Saint Peter’s University with a BS in Management Information Systems, and also pursued her MBA in Marketing.. Which she intends to finish one day soon! Fun fact about Frances - she plays the drums and was in a rock band when she was younger :)

 

 

Brielle Cummings, Project Coordinator (taking over for Rebecca Kornstein)
Brielle Cummings is excited to be the new Project Coordinator at FACES. She comes from The Arc of Essex County where she was the Special Events and Development Coordinator. She has experience in executing two major events: a beer, wine, and food fest and a 5K run, both which raised an average of $70,000. In her free time she is an avid reader and is learning how to play the guitar.

 

 

 

 

13) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

APPLE & ALMOND BUTTER CEREAL

A serving provides: ketogenic ratio: 2:1, calories kcal 305, 5.46 net carb grams, and 8.4 protein grams.

Ingredients:

  • 38g almond butter, ground raw almonds done at home
  • 30g apple sauce, unsweetened
  • 9g coconut oil, melted
  • 0.2g - 1g ground cinnamon, calculate for your taste
  • pinch of salt

Directions:
Combine all ingredients together in a small bowl. Stir very well to evenly incorporate the ingredients.

Notes:
Eat the cereal at room temperature or gently warm it.
For higher ratios, consider using ground macadamia nuts in place of the almond butter.
Thin the consistency with water if it is too thick.

This recipe has been provided from The Charlie Foundation
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.

14) NOTE WORTHY NEWS

Top 10 National Press Articles

  1. Cannabidiol Works in Dravet, Lennox-Gastaut
  2. Factors Predictive of Everolimus Efficacy in Tuberous Sclerosis Complex
  3. Cannabidiol Reduces Seizures in Novel Animal Model of Epilepsy
  4. Tuberous Sclerosis Complex, Associated Seizures, and Developing Treatment
  5. Pearls from: Orrin Devinsky, MD
  6. GW Pharmaceuticals Delivers Positive Seizure Data, Worries About Trump
  7. Educating Patients on Sudden Death Syndrome in Epilepsy
  8. FACES was a key funder of this study ,which made the cover of Nature Neuroscience
  9. Cellophane-Like Electrode Implant Records Brain Activity During Epilepsy Surgery
  10. Experts: FDA Approval of Concussion Test Means Little