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FACES E-NEWSLETTER FEBRUARY 2019

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1. FACES GALA 2019

2. BROOKLYN PEACE OF MIND

3. HOW EPILEPSY HAS CHANGED OUR WORLD, BY: JESSICA LEEST

4. 2019 FACES EPILEPSY CONFERENCE

5. PURPLE SPOON: RECIPE OF THE MONTH

6. DR. BLANCA VAZQUEZ SUMMER CAMP SCHOLARSHIP

7. FACES COLLEGE SCHOLARSHIP

8. NOTEWORTHY NEWS

Mark your calendars for this year’s FACES Gala! It will be held on Monday, March 4, 2019.

Click here for more information. Click here to purchase tickets or make a contribution.

Unable to attend? Click here to make a gift to FACES Gala 2019.

Photos from last years event (photography by Josh Wong):

On February 7th, the epilepsy team at NYU Brooklyn held their fourth Peace of Mind Lecture of

the year, with Dr. Nisida Berberi, Dr. Mariana Szuchmacher, and Dr. Gianna Locascio leading a

discussion about childhood epilepsies and navigating the school system. The tone was informal as

caregivers and physicians discussed the diagnosis of epilepsy in children, the challenges of caring

for a child with epilepsy, and important issues in transitioning from childhood to adolescence. Dr.

Szuchmacher discussed the impact of epilepsy for Teens: driving restrictions, alcohol and drug use,

contraception and pregnancy. Dr. Berberi discussed restrictions on sports and other activities in

children with epilepsy. Dr. Locascio discussed neuropsychological testing, and how to obtain the

most appropriate and best quality services for children and adolescents with epilepsy in the

school system and in the community.

The parents who attended had questions and also offered insights from their own experiences.

These lectures are a great opportunity for those in Brooklyn living with epilepsy and parents of

children with epilepsy to get together to meet each other and get to know our physicians in an

informal setting.

Our son Ethan was diagnosed with a Rare Genetic Epilepsy when he was 5 months old.

The news was so devastating. I remember thinking, what will our future bring? How will we learn

to take care of this “different” type of sickness that we were not familiar with? I remember my

husband being on the phone with a drug company and them telling us that one of the side effects

of the drug we were going to be given to try and help, could cause death.

We spent months in different

hospitals, hoping to hear something different

from a doctor that would give us some type

of hope. A seizure disorder that could not be

controlled? Our son, suffering from 300 plus

seizures a day, how could this be? How could

we have a newborn baby with such a severe

diagnosis? How are we going to make it?

The answers did come but it took several

years.

My husband and I are very fortunate to have such an amazing support system. All of our

family and friends were right there by our side to give us everything we needed. From

grandparent stays in the hospital, to dinners out with friends, to shoulders to cry on, we had

amazing people around us. When you hear the term it takes a village… it truly does take a

village when you have a severely disabled child. The more people you have to talk to about

your situation the better.

I remember reading different blogs, joining different Epilepsy Support Groups and trying

to find answers to our new

journey. In doing research we

found an amazing neurologist,

Dr. Lajoie. Everyone spoke so

highly of her and so we decided

to make an appointment with yet

one more doctor. I remember

meeting her for the first time and

asking her questions that she did

not even have the answers to.

This disease is something that needs to be taken one step at a time. Every day is a new day and

a new challenge, it is not a sprint, it is a marathon. She not only cared about Ethan and his

diagnosis, but about the entire family.

As a mom, relating to another mom, she totally understood and encouraged us to have

another child. My husband was very against the idea, knowing Ethan had such a rare disease

and he was worried it would happen again. Dr. LaJoie helped us through the entire process of

having tests run and seeing Genetic Specialists. We found out that the genetic epilepsy that

Ethan was diagnosed with was not something passed down from one of us, it was a random gene

mutation. This helped our desire to have more children.

We have since been blessed with two more healthy children, Colton (3 years old) and

Shayla (5 months old). We have also built an extension on our home to be able to give Ethan

everything he needs while still being part of our family at home. I feel that we have become a

better family because of how we have been affected with this disease. The answers that we

were looking for when we were first diagnosed, we have finally found. We are exactly where

we should be. We have learned to care for Ethan like I never thought we would be able to. He

is still suffering from seizures, but they have been more controlled with CBD oil. Thank you to Dr.

Orrin Devinsky for adding Ethan to the study at NYU Hospital. Ethan has changed our entire

family and has made us all better people.

My outlook has changed so

dramatically since we have been

diagnosed. I now see things as I don’t think

I would have ever seen back then. I

appreciate all of the little things in life. My

advice to any family just being affected is

to stay positive, take it one day at a time,

use all resources around you, and never lose

hope. In time, you will find your answers.

The bottom line is: you will find your new

normal.

Want to know what it’s all about? Visit us here to check out some of the lectures and presentations from previous years. Hope to see you there!

Epilepsy Conference

~SAVE THE DATE ~

SUNDAY, APRIL 28, 2019

8:30 AM- 3:30 PM

Chocolate Avocado Truffles -recipe adapted from the Charlie Foundation Share these delicious treats with your loved ones during Valentine’s season!

Ingredients:

• 200 grams or 2 medium ripe avocados • 50 grams or about ¼ cup cacao butter, melted • 24 grams or 2 generous tablespoons melted coconut oil • 30 grams or 4 tablespoons cacao powder • Pinch of salt • Truvia or other sweetener of your choice • Optional: coatings of your choice; crushed nuts, cocoa powder, truvia mixed with orange zest, chia seeds, etc…

Directions:

1. Remove the skin and pits from the avocados. Using a food processor, pulse the avocado until completely smooth, scraping the sides several times. If you are using powdered sweetener, such as Truvia, add it to the avocado during this step so it has time to dissolve.

2. Add the remaining fats and cacao powder to the pureed avocado. Pulse several more times until the mixture is completely combined. Continue to scrape the sides of the processor to ensure there are no lumps.

3. Transfer the mixture to a small bowl and cover tightly with plastic wrap. Refrigerate until the mixture has cooled completely and set, at least 2 hours. You should be able to easily scoop and roll the mixture into a ball without it falling apart.

4. Divide the mixture into 15 equal portions and roll into round ball shapes. Coat them in your choice of ingredients and enjoy!

You can access this recipe (and more information about the Charlie foundation) online here!

This recipe makes about 15 truffles. Per serving, a truffle contains 8g of fat, 1g of protein, 1 g of net cards and the macronutrient ratio is 6.25: 1. Please contact your dietitian to adjust the

recipe for you or your child’s keogenic diet.

FACES is pleased to accept applications for thet 2019 Dr. Blanca Vazquez Summer Camp Scholarship! Summer camp can be a wonderful opportunity for children with epilepsy. Our Summer Camp Scholarship Program serves children with epilepsy in financial need and allows them to enjoy fun, confidence-buildling experiences. Our camp scholarship will be available on Tuesday, February 12. Applications are due on Tuesday, May 7th. Scholarship winners will be notified on Tuesday, June 4th. Applications will be available on our website: http://faces.med.nyu.edu/summer-camp-scholarship . For more information, please contact Brielle Cummings at 646-558-0820 or facesscholarship@nyulangone.org .

FACES provides partial financial support for the education of incoming freshman or currently enrolled college students affected by epilepsy and seizure disorders. We are excited for our annual scholarship to open for the upcoming year. This year’s application will be available on our website on Monday, March 11. Applications will be due by Monday, May 13. Scholarship winners will be notified on Tuesday, June 11. It will be will be posted on the website: http://faces.med.nyu.edu/events-programs/college-scholarship-program. For more information, please contact Brielle Cummings at 646-558-0820 or facessscholarship@nyulangone.org.

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Happy Valentine’s Day

from the FACES team!