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INSIGHT E-NEWSLETTER FEBRUARY 2021

VIRTUAL FACES GALA S A V E T H E D A T E Wednesday, April 28, 2021 at 7pm

Take a front row center seat in the comfort of your home! Hear from founder, Dr. Orrin Devinsky, and celebrity guests, win amazing prizes in our silent auction, and support FACES programs and services. In This Issue: 1.Virtual Gala Save the Date The first Monday in March of has a special meaning to the FACES Community. This coming year, a FACES Gala 2021 on this 2.Letter from Dr. day would pose risks, but our presence and service to the Devinsky community will not waver. Now, more than ever, the FACES 3. Scholarships community’s generosity is crucial to our efforts in further 4.Dating and pursuing innovative and promising research work, and providing patient and family programs and services. This is only possible 5. Fundraising due to the FACES community’s generosity, particularly through Spotlight support towards our annual major fundraiser, the FACES gala. 6.Purple Spoon 7.Auction Items For more information, please contact the FACES office at 8.In the News (646) 558-0900 or [email protected] A LETTER FROM DR. DEVINSKY REGARDING THE COVID VACCINE

The devastation that COVID-19 has brought has claimed far too many lives, devastated too many families and has had secondary effects that ripple through all segments of our lives. For individuals with epilepsy and their families, COVID raises additional concerns. Are they at greater risk of being infected? Are infections more likely to be severe? Are therapies to treat COVID and its complications safe? Is the vaccine safe?

The good news is that individuals with epilepsy are not at higher risk for COVID infections and they are not at higher risk for the complications of COVID such as pneumonia, cytokine storm (the body’s immune response on overdrive and harming our tissues), blood clots, or long-term after-effects such as fatigue or problems with concentration. However, people with epilepsy and other risk factors are at higher risk as are those without epilepsy. Current health conditions associated with increased severity of COVID infections include cancer, chronic kidney disease, chronic obstructive pulmonary disease, Down syndrome, heart conditions, immunocompromised state, obesity, pregnancy, sickle cell disease, smoking and type 2 diabetes. For those unfortunate to be infected and develop more severe illness, therapies such as remdesivir, monoclonal antibodies and dexamethasone are as safe for people with epilepsy as others.

The COVID-19 vaccines made by Pfizer and Moderna – the two approved vaccines in the United States – as well as the Astra-Zeneca/Oxford vaccine are all safe for individuals with epilepsy to take. As with so many other issues confronting our country, people are deeply split on their views about the vaccine. Many want it as soon as possible while others fear the side effects may outweigh the benefits. The data is clear and it is important to consider the evidence and try to limit the role of prior beliefs and emotions. The current CDC estimates are that 21,000,000 Americans have been infected with COVID and that 356,000 have died from COVID – thus 1 in 59 people who are infected will die. 253,000 deaths have occurred in individuals over age 65 years, many of whom had other high-risk disorder such as diabetes and lung disease. However, the CDC data is not as positive as people imagine for young adults. For those ages 25-34 years, 1 in 33 infected with COVID will die. For those ages 25-44, 1 in 18 infected with COVID will die. These are likely higher than reality, as many of those ages 25-44 infected with COVID may not have been tested or had severe illness, while all those with life-threatening illness are tested. But even if the numbers are 5 times lower, that would mean among young adults, 1 in 125 will die. Compare that to the more than 15 million vaccine doses worldwide, with not even one death definitely linked to the vaccine. And then there are the non-lethal effects of COVID infection and the vaccine – again, the negative consequences of COVID are orders of magnitude more severe and long-lasting than vaccine-related side effects.

How can you get the vaccine? Neither epilepsy nor most neurological disorders commonly associated with epilepsy – such as intellectual disability, cerebral palsy, , etc - are high risk conditions for COVID. Thus, individuals with epilepsy and most other neurological disorders are not a higher priority group. There are some exceptions, for example individuals with epilepsy who live in certain health care facilities are in the Priority 1A group in State. Each state has different regulations regarding the timing of COVID vaccines, and we encourage you to know your state’s policies.

In closing, focus on the basics. Standard 3-ply surgical masks which can be purchased for less than 50 cents per mask, when worn correctly – covering both nose and mouth – are extremely effective in preventing the spread of COVID. Until the pandemic is over, everyone, whether they have had COVID or are vaccinated, should wear masks in public settings. Avoid indoor gatherings and remember, few of the more than 20 million Americans infected with COVID thought they would get it, but they did.

Stay safe and looking forward to all of us being on the other side of the pandemic.

Orrin Devinsky, MD

For more information: https://www.epilepsy.com/learn/covid-19-and-epilepsy/covid-19-vaccination FACES SCHOLARSHIPS ARE OPEN! It's that time of year!

The FACES College Scholarship and Dr. Blanca Vazquez Summer Camp Scholarship are now both online. FACES is proud to offer partial financial assistance to students and children with epilepsy.

COLLEGE SCHOLARSHIP DR. BLANCA VAZQUEZ SUMMER CAMP SCHOLARSHIP Application link: Application link: http://faces.med.nyu.edu/application http://faces.med.nyu.edu/events- Due date: June 25, 2021 programs/dr-blanca-vazquez-summer- Award notification date: July 30, 2021 camp-scholarship-application Due date: May 31, 2021 Award notification date: June 28, 2021

All applicants must experience epilepsy or . Please visit the application links for more details and eligibility requirements. For questions, please contact FACES Scholarship Coordinator, Brielle Cummings at 646-558-0820 or [email protected]. Your inquiry will be answered within 48 hours. Love is in the air... A Peace of Mind Lecture on Dating and Epilepsy

On January 14, The FACES Team and Dr. Billakota sat down on Zoom to discuss a topic that has never been raised in the Peace of Mind Lecture Series before: Epilepsy and Dating.

In a candid talk, Dr. Billakota addressed some of the concerns that can come with dating and epilepsy. When deciding to tell a new partner about your diagnosis, based on conversations Dr. BIllakota has had with her own patients as well as online support forums, she suggests telling someone in person only if you feel that person would be supportive. The one caveat to this is if your seizures are not well-controlled, in which case you should tell a new partner in the event that you have a in front of them so they know what to do.

A topic that is intertwined with dating and epilepsy is sex and epilepsy. Sexual activity does not make a person more likely to have a seizure, but they can happen during sex, so it's best to talk to have open and honest communication with a sexual partner beforehand.

When it comes to medication and how it can impact someone with epilepsy's dating life, having another level of support can help a person stick to their medication regimen. It's also helpful to talk to your partner about how the side effects of medications (depression, sleepiness, grogginess) are impacting your libido or mood.

To be a good partner of a person with epilepsy, some things that you can do are know when their next doctor's appointment is, know what type of seizure to expect, and be seizure aware. Know how long their seizures last and what happens to your partner when they're seizing.

An overall takeaway from this talk was the notion that can be applied to any dating scenario; the right person will understand. Whether understanding means being supportive of an epilepsy or seizure disorder, or some other emotional baggage, if they're the right person they will take the necessary steps to support you. If they don't do that, they're not the right person.

For the full video of the talk as well as videos of all our other Peace of Mind Lectures, visit http://faces.med.nyu.edu/events-programs/peace-mind-lecture-series. To join one live, be sure to get on our mailing list! Click here to sign up.

Dr. Santoshi Billakota gave the lecture on dating and epilepsy. FUNDRAISING SPOTLIGHT

In Loving Memory of Howard Ganz

In a loving tribute, the Ganz family has made a memorial page in memory of Howard Ganz, who passed away on January 6, 2021. Friends and family have contributed over $25,000 in Howard's memory. We are so thankful to the Ganz family for thinking of FACES during this difficult time.

If you would like to create your own fundraising page visit https://nyulangone.org/give/fundraise/ For questions, please contact Brielle Cummings at [email protected] Chocolate Hazelnut Cookies *For 3:1 Ratio: Reduce the butter to 70 grams (about 1/2 a stick) and increase the chocolate by 14 grams (1/2 ounce).

206g FAT | 34g PROTEIN | 17g NET CARB YIELD: 16 - 24 Cookies DIRECTIONS: MACRONUTRIENT RATIO: 4:1* | CALORIES: 2061

KETO DIET PLANS: CLASSIC KETO, MODIFIED KETO, 1.Toast about two cups of whole, skin removed MODIFIED ATKINS, LOW GLYCEMIC INDEX, AND MCT OIL hazelnuts in a dry skillet over medium heat. Continuously stir them to prevent burning. They are finished when you can smell the nutty aroma. 2.Place the toasted hazelnuts in a food processor INGREDIENTS: fitted with the chopping blade. Pulse until the hazelnuts are completely ground into a coarse meal. 1 1/2 cups (150 grams) hazelnuts, 3.Measure 1 1/2 cups of the ground hazelnut meal. ground Set the resining meal aside for another use. 1 stick (114 grams) butter 4.Melt the butter and the chocolate together in a small 1 ounce (28 grams) Bakers saucepan. Unsweetened Chocolate (4 squares) 5.Combine all ingredients in the food processor and 1 large (50 grams) egg pulse until well combined. Thee dough will likely be 1 teaspoon (2 grams) baking powder too soft to roll due to the melted butter. Place the 1 teaspoon (2 grams) baking soda food processor bowl in the refrigerator or freezer for Sweetener of choice a few minutes until the mixture begins to cool. 6.Pulse the cooled mixture a few times. If it is still too soft, return it to the freezer for a few more minutes. Do not let it sit too long, or it will be too solidified to roll into cookies. 7.Roll the dough into 16 - 24 cookies. Place on a baking sheet lined with parchment and bake at 350 degrees F for 10 minutes. The tops should crack slightly. Allow the cookies to cool on the baking sheet before storing an an air tight container. Source: The Charlie Foundation WWEE NNEEEEDD AAUUCCTTIIOONN IITTEEMMSS

To make the Virtual FACES Gala a success, we're looking for prizes to put in the silent auction. Items should be at least $250 in value and may be paired with other items. For questions, please contact the FACES office at 646-558-0900 or [email protected].

1. FDA Approves Blood Test That Gauges Mild Concussion Within 15 Minutes This article was picked up by news websites across the country. NY Daily News – January 12 -Farng-Yang A. Foo, MD, clinical associate professor, Department of

2. New Traumatic Brain Injury Test Is 'Game-Changing,' Concussion Experts Say This story was picked up on news websites across the country. ABC News – January 11 -Steven R. Flanagan, MD, the Howard A. Rusk Professor of Rehabilitation Medicine and chair, Department of Rehabilitation Medicine -Farng-Yang A. Foo, MD, clinical associate professor, Department of Neurology

3. Neurologists Face Old and Some New Challenges as COVID-19 Surges Anew Neurology Today – January 7 -Steven Galetta, MD, the Philip K. Moskowitz, MD Professor and Chair of Neurology, Department of Neurology, and professor, Department of Ophthalmology -Jennifer A. Frontera, MD, professor, Department of Neurology, NYU Langone Hospital–

4. How Pharmaceutical Innovation Is Saving the World NeurologyLive – January 6 -Jennifer A. Frontera, MD, professor, Department of Neurology, NYU Langone Hospital–Brooklyn

5. 2020 Wrap Up: Silver Linings NeurologyLive – December 31 -Jennifer A. Frontera, MD, professor, Department of Neurology, NYU Langone Hospital–Brooklyn

6. Optic Nerve Lesions May Help Improve MS Diagnosis This article was picked up by news websites across the country. Physician’s Weekly – December 21 -Steven Galetta, MD, the Philip K. Moskowitz, MD Professor and Chair of Neurology, Department of Neurology, and professor, Department of Ophthalmology

7. COVID-19’s Impact on Clinical Care Strategies: Adopting New Methods NeurologyLive – December 22 -Jacqueline A. French, MD, professor, Department of Neurology

8. Forecasts of Epilepsy Seizures Could Become a Reality Scientific American – December 18 -Jacqueline A. French, MD, professor, Department of Neurology

9. 10 Ways to Beat the Chronic Pain of NMOSD HealthCentral – December 18 -Jonathan E. Howard, MD, associate professor, Departments of Neurology, and Psychiatry

10. I’m a Neurologist Who Happily Volunteered for the AstraZeneca Vaccine Trials. Here’s What People Are Getting Wrong About the Process. Business Insider – December 15 -Jonathan E. Howard, MD, associate professor, Departments of Neurology, and Psychiatry

11. CBD Effective Regardless of Infantile Spasm History, Fenfluramine Effective in CDD, Wristband Sensor Data May Predict Seizures NeurologyLive – December 12 -Orrin Devinsky, MD, professor, Departments of Neurology, , and Psychiatry, Comprehensive Epilepsy Center

12. CBD Gel Cuts Seizures in Pediatric Patients Medpage Today – December 9 -Daniel Friedman, MD, professor, Department of Neurology

13. Fenfluramine Shows Potential in CDKL5 Deficiency Disorder NeurologyLive – December 8 -Orrin Devinsky, MD, professor, Departments of Neurology, Neurosurgery, and Psychiatry, Comprehensive Epilepsy Center

14. What Is CBD Oil? Here’s What You Need to Know Reader’s Digest – December 7 -Orrin Devinsky, MD, professor, Departments of Neurology, Neurosurgery, and Psychiatry, Comprehensive Epilepsy Center

15. The Struggles of Getting Quality Sleep During the Pandemic NBC New York – December 3 -Alcibiades J. Rodriguez, MD, assistant professor, Department of Neurology

NYU FACES th 223 East 34 Street, New York, NY 10016 www.nyufaces.org | [email protected] | (646) 558-0900 @facesfriends on Facebook |@nyufaces on Twitter To donate, visit http://nyulangone.org/give/funds/faces-finding-a-cure-for-epilepsy-and-seizures