NOVEMBER 2013 FACES E-NEWSLETTER
- Traveling to Russia
- Game Day 2013 Highlights
- Recipe of the Month
- CEC Spotlight: Carmen Gray, Billing Coordinator
- Team FACES at 2013 ING New York City Marathon
1) TRAVELING TO RUSSIA
By: Jacqueline French, MD
Dr. French standing outside of the Church of the Spilled Blood, St Petersburg.
I travelled to Russia to attend an investigator’s meeting to launch a study for a new antiepileptic drug. The name of the drug is Ganaxalone. The study will be performed both at investigative sites in the United States and Russia, and through a Russian collaboration, could be submitted for approval in both countries if the study is successful. My role was to do training on seizure and epilepsy classification, so that data from the two countries would be harmonized.
As I learned, availability of a new antiepileptic drug would be a wonderful benefit to Russian patients suffering from epilepsy, as they currently have access to a very limited choice of medications. I learned that most people receive their medications from either the national or state government. Unfortunately, it is not uncommon for the drug supply to be exhausted by November or early December. At that point if people do not have the means to pay for their drugs, the consequences can be disastrous.
Dr. French and Dr. Khrolenkov at the Leningrad Clinic.
I was able to visit an epilepsy clinic outside of St Petersburg, in the “Leningrad district”, as well as one in Moscow. We met with Dr. Evgeniy Khrolenkov, and Dr. Maria Kataeva from the Leningrad Regional Clinical Hospital. They care for 7,000 people with epilepsy in the district. In general, the care is very similar to that in the United States, although they do not have access to video-EEG monitoring in their hospital. They told me that in special cases they are able to send people for these services to the academic clinic in St Petersburg. Surgery for epilepsy is even more limited. In the previous 10 years, only 3 people were sent to St Petersburg for surgery.
2) GAME DAY 2013 HIGHLIGHTS
By: Courtney Lipson
Where were you on Saturday October 25, 2013? I bounced around from taking the SAT, to quickly getting home and making my way to Chelsea Piers for the annual FACES Game Day. Due to the unfortunate circumstance of having to take a five-hour test at eight in the morning, I arrived at Game Day about twenty minutes into its start time. When I walked into the Chelsea Piers Field House the turf field flooded with children, adults, and new activities appeared everywhere I looked. Olympian Chanda Gunn, an American ice hockey player, was the event emcee and could be heard as I entered the field.
The first things I noticed were the bounce houses. Even as a 17-year-old girl, I still think those are one of the most entertaining attractions at a carnival. There were three of these bounce houses around the field filled with kids and adults. Besides the bounce houses, the floor was filled with many other games including classic carnival games and a lollipop game.
Another addition to the activities at Game Day was the wide variety of art projects. From cookie decorating, to Halloween decoration, and spin art T-shirts, adults and children were able to show their inner Picasso. The one activity that repeatedly proved how truly inartistic I am, was the mural painting station. If you were lucky enough to climb the flight of stairs up to the balcony looking over the rest of game day, you probably took part in the mural painting. The mural painting was a very unique activity. A painting was divided up into about 250 pieces and each participant was given a piece of the original picture and a blank square. Then, each person would paint the piece of the original picture onto the square as best they could. When all the pieces are done, they will be put together to form a larger version of the original panting. This mural will be shown at the 2014 FACES Gala.
For the more athletic guests, there were a number of different sports to play. There was air hockey, pop a shot basketball, and even rock climbing! These activities all let children play and have healthy competition among each other. On a less competitive (unless you’re like me and everything is a competition) scale, there were bingo games. The bingo games also allowed children and adults to play with and against each other and get to know one another.
Lastly, there were various shows and visual attractions throughout the day. There was a balloon sculptor who made various balloon figures such as swords and hats. Two caricaturists also drew outstanding caricatures of the children. For the whole audience, there was a magic show and even a basketball show with Mighty Mike Simmel of the Harlem Wizards.
Of course, with all these activities people were bound to get hungry. All around the field house were various stations to get food. These foods included classic carnival foods such as cotton candy, ice cream and popcorn, as well as healthier options like grilled chicken and veggie sticks.
Overall, the day was a huge success. There were over 500 guests total hanging out around the field house, having fun, and of course supporting a great cause.
3) RECIPE OF THE MONTH
By: Courtney Glick, MS, RD, CDN
STUFFED ACORN SQUASH
Yields 2 servings
Nutrition Facts per serving: 400 calories, 24g fat, 34g carbohydrate (6.5g fiber), 19g protein
Acorn squash is high in both vitamin C and magnesium – containing nearly 25% of your daily recommended intake in 1 cup. Magnesium is involved in over 300 biochemical reactions in the body, making it a very important mineral. Magnesium also contributes to the structural development of bone and studies have linked adequate magnesium intakes to lower rates of heart disease in adults. In addition to acorn squash’s nutrition power, the spinach also contributes a plethora of nutrients including more than 30% of your recommended intake of; vitamin C, A, K, folate, magnesium and iron in 1 cup. This low calorie recipe is heart healthy with almost all of the fat being from unsaturated (heart healthy) sources. In addition this recipe contains 22% of your daily recommended fiber intake. Fiber helps block the absorption of cholesterol and high intakes of fiber have been linked to lower rates of obesity, many cancers and heart disease.
1 large acorn squash halved and seeded
¼ pound ground chicken
2 tablespoons extra virgin olive oil
½ of a yellow or sweet onion diced
1 large carrot diced
1 large celery rib diced
1 tsp chopped fresh sage
1 tsp chopped fresh thyme
½ cup sliced mushrooms
½ of a package (drained and thawed) frozen spinach
¼ cup dry white wine
¼ cup parmesan cheese
Lemon juice to top
Optional: can add 1/3 cup cooked quinoa or wheat berries or 1/3 cup cooked white cannellini beans at step 3 or can substitute one of the above (for the chicken) to make it a vegetarian dish.
- Cut each acorn squash in half and scoop out the seeds. Brush the squash with olive oil. Set squash on a sheet pan lined with parchment paper. Set aside.
- In a large sauté pan over medium/high heat cook carrots, onion, mushrooms and celery in oil until tender (about 2-3 minutes). Add the chicken to the pan and brown the chicken until cooked (about 3 minutes). Deglaze the pan with the white wine.
- Add the thawed and drained spinach, thyme, sage, oregano and salt and pepper, to taste. Stirring constantly, heat mixture thoroughly, approximately 2 to 3 minutes until most of the liquid is re-absorbed. Note: make sure that the thawed spinach is drained as much as possible to avoid extra liquid in the pan. This can be done by squeezing it with a paper towel once thawed.
- Remove from the heat. Divide the mixture evenly among the squash halves and top with parmesan cheese. Bake until tender (about 30 minutes). Squeeze a little lemon on top. Serve immediately.
4) CEC STAFF SPOTLIGHT: CARMEN GRAY
Carmen Gray is the Billing Coordinator at the NYU Comprehensive Epilepsy Center for the past 2 years. A graduate of Syracuse University, one of her primary responsibilities as the Billing Coordinator is to correspond with insurance carriers and referring providers to obtain authorization for patient services. Carmen meets daily with patients and their families to resolve any billing inquiries with the care they receive. When outpatient services are provided at the Comprehensive Epilepsy Center, Carmen processes all insurance claims to ensure that timely payments are made to the center. She is also responsible for the day-to-day medical billing operations and account receivables. Carmen says “it is very rewarding to build relationships with the patients to resolve any billing questions or concerns they have” she looks forward to continuing to work closely with patients, colleagues, and insurance carriers to facilitate the changes in the current healthcare system.
5) TEAM FACES AT THE 2013 ING NEW YORK CITY MARATHON
On Sunday, November 3rd, six dedicated athletes ran with Team FACES in the 2013 ING New York City Marathon. For weeks, our six team members not only trained to run 26.2 miles, but they further spread awareness for FACES and epilepsy.
Each runner took this incredible opportunity to reach out to their families, friends and colleagues to explain why we need to generate more conversations around epilepsy, and why we need to raise funds to support the important programs and life-saving research done at the NYU Comprehensive Epilepsy Center.
They embarked on their training plans, and each set a goal of a minimum of $5,000 to fundraise for FACES. When Marathon day came, each runner showcased Team FACES t-shirts to let the millions of
spectators and thousands of other athletes know just how important it is to fund epilepsy, and one day find a cure.
Team FACES started the NYC Marathon with over $52,000 raised! To top it off, each runner still has until Friday, November 29th to meet and even exceed their personal fundraising goals, so be sure to help them out!
FACES CANNOT THANK OUR RUNNERS ENOUGH FOR THEIR COMMITMENT TO OUR MISSION AND TO THE FAMILIES OF OUR EPILEPSY COMMUNITY. BELOW PLEASE READ MORE ABOUT EACH RUNNER.
This was Team FACES first year, and we look forward to continuing our marathon program in future years to come. If you have any questions, please contact Alyssa Giorgio at email@example.com
MEET THE RUNNERS:
Smith Anderson – one of our seasoned runners on Team FACES for the NYC Marathon – is fundraising in honor of Joey Buldo-Licciardi, who passed away from SUDEP at the age of 13. Smith’s goal is to spread awareness, as epilepsy is among one of the least understood medical conditions.
In honor of her 50th Birthday, Ulrika Citron is challenging herself by running her first marathon - for a reason much larger than her birthday. Ulrika was struck very personally by epilepsy 5 years ago and wants to raise additional funds so Dr. Orrin Devinsky and his team at NYU can continue their cutting edge research, and continue to change people’s lives every day.
For Martina DiMarco, running in the NYC Marathon has always been a dream! Since joining Team FACES, she has taken her dream one step further by fundraising for FACES. Martina believes with more attention and resources, epilepsy care here at the NYU Comprehensive Epilepsy Center can only further improve, making the dreams of others come true.
The Merritt family strongly believes in the importance of raising awareness of and supporting FACES, which is why Kevin has decided to run with Team FACES in the upcoming NYC Marathon. Through the team's efforts, the Merritt’s hope to improve the lives of people battling the challenges of seizures, including their son, Teddy.
Richard Shane is running with Team FACES to show those living with seizures that they can control their epilepsy, not the other way around! Richard is nearly 10 years seizure free, after 22 yrs of 3,000 seizures & 2 brain surgeries. He’s training for his first marathon, all while raising funds to help others have the same blessing he’s been given.
Team FACES runner Scott Sigel is no stranger to marathons, yet this time he’s mixing things up by raising donations for FACES! Scott is bringing much needed attention to epilepsy, but specifically SUDEP in honor of the tenth year since the passing of Joey Buldo-Licciardi. His commitment to joining us in finding a cure & improving the lives of others is much appreciated.
Geoff decided to challenge himself in 2012, with a goal of completing the 4.4 mile Chesapeake Bay Bridge swim followed by the NYC Marathon all in one year, all while raising funds and awareness for FACES. Due to Hurricane Sandy the marathon was cancelled, but Geoff did not give up on his goal. He's back at it again for the 2013 marathon, and is continuing to support FACES in his efforts.
By: Benjamin Kaufman
"We do know that the vast majority of women with epilepsy have healthy children, we are talking about a relatively small increased risk, but we want to reduce that risk as much as possible. We want them to have the same lack of risk other children have."
– Dr. Kim Meador, Principle Investigator of MONEAD
When planning pregnancy, women and their families are faced with a number of questions. Will my child be healthy? How will events during pregnancy affect the development of my child? Is there anything I can do to ensure a healthy pregnancy? Women with epilepsy face these same questions and more. How do seizures and medications affect pregnancy? Although the majority of women with epilepsy have normal pregnancies, they appear to be at risk for various problems during pregnancy (seizures, c-sections, depression, etc.) and/or with the development of their children. Researchers at NYU are working with 19 clinical sites across the country on MONEAD, a project which seeks to better understand the risks during pregnancy associated with seizures, anti-seizure medications, and other possible factors, in order to be able to answer some of these questions for women in the future.
MONEAD (a.k.a. Maternal Outcomes and Neurodevelopmental Effects of Anti-epileptic Drugs), is an extension of a previous study, called NEAD, which was instrumental in uncovering the elevated risk of birth defects and cognitive delays caused by the drug valproate (Depakote). The NEAD study changed how anti-epileptic drugs are prescribed to women, but there is still a lot we don’t know.
In this follow-up, the scope of the study has been expanded as we will observe women, on many different anti-seizure medications, from early in their pregnancy, and follow the development of their child for several years. Over this time, 350 pregnant women with epilepsy and 200 controls will track their seizures, medications, and mood fluctuations daily in our iPod diary, and participate in periodic office visits, allowing us to capture a complete picture of their pregnancy and any factors that may contribute to developmental or maternal health outcomes.
Ultimately, the findings from the MONEAD study will allow women with epilepsy and the clinicians caring for them make better informed choices about treatment during pregnancy. Physicians will also be able to use this information to more effectively adjust doses during pregnancy in order to keep the mother’s seizures well-controlled while minimizing any negative effects on the mother and on the child’s growth and development. Through MONEAD, we may begin to provide better answers and ultimately improve the medical care of women with epilepsy during this critical time in their lives.
If you are a woman who is pregnant or considering pregnancy, and are interested in learning more about the MONEAD study, please contact the study coordinator, Ben Kaufman, at Benjamin.firstname.lastname@example.org, or (646)558-0843 for more information.