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Wednesday, April 28, 2021 at 7Pm 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 Epilepsy 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, autism, 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 New York 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 seizures. 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 seizure 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).
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