April 2013 FACES E-Newsletter
- Meet Nako Ishii, FACES Project Coordinator
- A Story of Commitment and Triumph Over Epilepsy
- Dr. Blanca Vazquez Summer Camp Scholarship Program 2013
- Epilepsy Foundation walk
- Nutrition Corner
- Ryan’s Story
- News from Oliver Sacks, MD
- Research Corner
- Save the Date- Peace of Mind Lecture Series & Annual Epilepsy Conference
Meet Nako Ishii, FACES Project Coordinator
Nako Ishii joins FACES at NYU Langone Medical Center as the new Project Coordinator. Nako graduated last May from Soka University in Aliso Viejo, CA with a Liberal Arts degree within the Social Behavioral Sciences concentration. She spent the summer juggling two internships. One with DoSomething.org, the country’s largest nonprofit for young people and social change, and the other with Susan Ulin Associates, LTD., a fundraising and event management company that consistently generates an aggregate of more than $35 million annually. Two months into her internship, Nako was promoted to a full-time Account Executive position, brought on to simultaneously manage three events. She has effectively worked with boards of directors, event committees, and society figures to ascertain precise event requirements and through her time at Susan Ulin, learned the ins and outs of fundraising in New York.
Nako is excited to join the FACES team and looking forward to meeting everyone!
A Story of Commitment and Triumph Over Epilepsy
By: Stephanie Smith
For many people with epilepsy, finding a temporary cure can be daunting: going through trial and error with different medications and dosages. For 17-year-old, Emily Wall of Belmar, New Jersey, finding a cure through diet became her answer. Emily started the ketogenic diet over a year ago, and has been seizure-free since then.
The ketogenic diet is one of the strictest and most difficult diets to follow. But for those with willpower and determination like Emily, it is possible to be seizure-free. Although the beginning was difficult for Emily, she knew that she needed to remain committed, because she would never know if it could help her epilepsy. Now, after over a year of success, Emily has become a poster-child for this diet to prove to other children and adults that it is possible to be freed of seizures.
The ketogenic diet’s tight calorie control, high fat intake, low carbohydrates and moderate protein intake allows your brain to use fat as energy, in place of carbohydrates. The breakdown of fat for energy creates substances called ketones. It is unknown exactly how the diet protects an individual from seizures, but it is theorized that the absence of sugar and the presence of ketones play a role. A dietitian must determine the specific ratio or fat, protein, and carbohydrate, that is suitable for the individual. Meals must be weighed, eaten at a certain time and consumed in full, in order to maintain ketosis.
Anyone is eligible to begin the diet, unless there are pre-existing metabolic conditions or your doctor or dietitian does not recommend it. It is most common for kids under eighteen to begin the diet, due to better compliance. 50% of kids who begin the diet, see a 50% improvement in seizures; and 10-15% of those on the diet will be seizure-free.
Emily has been living the past year following this strict diet. As a high school student, she admits, “It’s hard to find stuff to do with friends, because every social situation usually involves food.” Regardless of the 50% success rate, Emily never believed that she would fail because she realized that this diet could save her from suffering. “It’s a whole new lifestyle and like anything, it’s hard to adjust to,” says Emily.
Although there are some side effects that can occur from being on the diet, Emily experienced very few. She did experience the pain of adjusting to a new lifestyle, though. Emily says, “the first few weeks were so hard, but I never wanted to give up. I just had to learn how to deal with things the hard way.”
For those that are contemplating beginning the diet, Emily has some wise pieces of advice. First, “hunger is a state of mind.” Since the diet’s calories are tightly controlled with limited meals and snacks, your mind may wander to thinking about food, but Emily enforces that “distraction is the best medicine.” Emily also says that a strong support system is incredible. Her mother helps make all of her meals and the rest of her family understands what Emily is going through, so they comfort her when she needs it. Besides her family, Emily’s community has reached out in more ways than one. “Teachers at school will help me keep my food cold and everyone is so accommodating,” says Emily. After creating YouTube videos (that were featured in the March FACES E-Newsletter), people that Emily didn’t even know would show their support by complimenting Emily on her courage and determination. “Knowing that people watch my videos and are supportive, is a good feeling.”
Emily’s story is one of great effort and achievement, but she realizes that not everyone is a fortunate as her when on the diet. She reaches out to other children that are on the diet to talk to them and be their support system. “I had to learn everything the hard way, so I like to give people my advice when I can.”
Emily will be graduating high school in the spring and will be off to college come fall. “My heart is set on California, but who knows where I’ll decide to go,” Emily says in reference to her college plans. As far as the diet goes, “wherever I go, they’ll have to accommodate me, so I know it will work out!”
To learn more about the ketogenic diet and what it can do for a person with epilepsy, Emily suggests logging on to Charliefoundation.org or The NYU Epilepsy Diet Treatment Page.
About The Writer, Stephanie Smith: Originally from Pearl River, NY, Stephanie Smith is in her junior year at Boston University studying nutrition and journalism. She is a patient of NYU Langone’s Comprehensive Epilepsy Center and has had juvenile myoclonic epilepsy for four years. Stephanie is delighted to say that she is now seizure-free. Stephanie loves photography and hopes to incorporate that into a career one day. She also enjoys cooking, baking, yoga and travel. FACES is looking forward to having Stephanie on-board as a “resident writer” for the monthly Insight newsletter.
Dr. Blanca Vazquez Summer Camp Scholarship Program 2013
FACES (Finding a Cure for Epilepsy and Seizures) is pleased to accept applications for the 2013 Dr. Blanca Vazquez Summer Camp Scholarship Program. Summer camp can be a wonderful experience for children with epilepsy. Our Summer Camp Scholarship Program serves children with epilepsy in financial need and allows them to experience fun, confidence-building activities.
The deadline to apply is May 1, 2013
Epilepsy Foundation Walk
On Saturday, April 20th, 2013 hundreds of teams will participate in the 7th Annual National Walk for Epilepsy on the Washington Monument Grounds in Washington, DC. NYU FACES has formed a team, led by Dr. Jacqueline French, and we’d love for you to join us or make a contribution to show your support.
PLEASE CLICK HERE for more information on the walk or to join the NYU FACES team.
By: Dara Tannariello
Vegan Mint Chocolate Chip Ice Cream
Total Time: 40 minutes - 24 hours
Prep Time: 40 minutes
Approx. 4 servings
2 1/2 cups soymilk
1 cup soymilk powder
Approx. 24 medium to large fresh mint leaves, teared
1/2 tbsp cider vinegar
3/4 cup granulated sugar
1/2 cup powdered sugar
Pinch of salt
1/3 cup dairy-free dark chocolate, finely chopped
- In a blender, combine the soymilk, soymilk powder and vinegar until well blended.
- Combine the soymilk mixture, with the mint, the sugars, and salt in a small saucepan over medium-low heat. Stirring constantly, cook until the mixture is thick and syrupy, almost like a pudding. Once the mixture has thickened, take it off the heat. Strain the mixture through a fine mesh sieve. Throw the mint leaves out. At this point, if you have an ice cream maker follow the ice cream maker directions. If not, follow the old fashioned method.
Ice Cream Maker Method:
- Chill the mixture in the fridge or freezer until the mixture is completely cooled (approx. 20 minutes in the freezer, or approx. 1 hour in fridge.) If using the freezer method, check the mixture about every 5 minutes to make sure it is not freezing at all around the edges of the bowl. If it is freezing around the edges of the bowl, just scrape the edges with a rubber spatula.
- Once the mixture is cooled, follow the directions for your ice cream maker. For my ice cream maker, I put the mixture in and turned on the machine for 30 to 45 minutes. Make sure to scrape the sides of the ice cream maker bowl so the mixture comes out smooth. If you do not scrape down the sides of the bowl, the mixture will be completely hard on the edge of the bowl, and soft in the middle. Once the mixture looks like soft serve ice cream, fold in the chopped chocolate. Pour the mixture into a freezer proof bowl and place a piece of plastic wrap directly on the ice cream so it covers the entire surface. Put the mixture in the freezer until desired consistency is reached. For a softer consistency, freeze for 1 to 2 hours. For a harder consistency, freeze overnight.
- Serve ice cream cold, adding your choice of toppings if desired.
Old Fashioned Method:
Pour mixture into an 9" x 5" metal cake pan or other medium-sized metal or aluminum pan.
Place the pan in the freezer uncovered for 1 hour.
- Remove the pan from the freezer and scrape the ice cream into a blender and blend on high for 30 seconds, or until mixture is creamy. Place the mixture back in the pan and back into the freezer. Repeat this procedure 3 more times at 30 minute intervals, allowing the ice cream to chill in the freezer for 1 hour after the last blend before serving.
- Serve ice cream cold, adding your choice of toppings if desired.
Nutrition Analysis of Soymilk
Soymilk is made simply by soaking soybeans in water and then grinding them with the water. Then, you must strain the fluid and the result after straining is called soymilk.
Soymilk contains tons of calcium and potassium. 1 cup (8 fl. oz) of soymilk contains 450mg of calcium, which builds bone health, and 340mg of potassium, which can counter the effects of sodium on blood pressure while lowering your risk of kidney stones and loss of bone density.
In addition, soymilk contains isoflavones, which can ease menopause symptoms, reduce heart disease risk, protect against prostate problems, improve bone health, and even reduce cancer risk.
Calories (per serving): 294.125
Carbs (per serving): 29.06g
Protein (per serving): 2.5825g
Fat (per serving): 6.36g
This ice cream only has 6.36g of fat per serving, verses regular mint chocolate chip ice cream bought at the grocery store which has more than twice the amount of fat found in vegan mint chocolate chip ice cream.
By: Peggy Quinlin (Ryan’s mother)
Epilepsy has affected Ryan and our family on so many different levels it’s impossible to write them all down. Normal activities such as getting a haircut, going to the dentist or just walking to a friend’s house became impossible. The most difficult part of having epilepsy for Ryan is the social impact it has on his life. Ryan had a group of friends that virtually disappeared once his seizures increased. They had stopped talking to Ryan at school. They ignored his phone calls and just ignored him altogether. If Ryan went over to their house, they would disappear until Ryan left. This happened many times. Ryan soon realized that his seizures were a problem for his friends. One of Ryan’s coping strategies was to keep quiet at school and “stay under the radar” so that no one would notice him having seizures, but it became impossible as they increased.
Fortunately, Ryan is very resilient and decided he would join the school track team to make new friends who would accept him. Ryan worked hard and started to make new friends. After Ryan had a seizure at a track meet, he was immediately told he was off the team. I was told Ryan’s seizures made everyone uncomfortable and nervous. Ryan was told that he could endanger his teammates if he had a seizure and someone tripped on him. Ryan couldn’t understand why the coach was overreacting to a seizure. Ryan’s neurologist at the time gave the school clearance so that Ryan could rejoin the team, but he was not allowed to return. It was heartbreaking to see Ryan waving to his teammates as we drove past the track to take Ryan home each day from school. This was heartbreaking for all of us. Ryan would ask how the school could get away with this: “This is America!” We advocated daily for his return. Some of the kids on the track team voiced their support to Ryan. Amazingly, two teammates threatened to quit the track team if Ryan was not allowed to return.
Weeks later, Ryan went to school with his team jersey hidden under his t-shirt in the hopes he would be able to compete on the last day of the season. Ryan waited and finally heard an announcement. The track team was told to report to the back of the school to board the bus. Ryan was told not to board the bus with no explanation. I received a call from the principal asking me to pick up Ryan. When I came to pick him up, I found Ryan crying at the back of the school and alone. You would have thought he would have just given up. Instead, he wiped away his tears and asked me to drive him to the track meet so he could cheer on the two boys that offered to quit the team for him. He said, “hey mom, I’m just like that guy in the song by Green Day, ‘I Walk Alone’ - my shadow is the only one who walks beside me - just like the song, right mom?”
This whole ordeal changed Ryan. He felt rejected, and he vowed to change the way people living with epilepsy are treated.
I am eternally grateful for the support Dr. Devinsky gave Ryan and our family. He never gave up on Ryan. His seizures were considered intractable. We were told by other neurologists that we should not hold out much hope and that Ryan would eventually decline mentally or perhaps die of a seizure. At the NYU Comprehensive Epilepsy Center, Ryan was given 100 percent attention, and the doctors, nurses, nutritionist and staff worked as a team. Ryan made a complete turnaround and we consider it miraculous! Ryan went from having approximately 96 absence seizures and worsening grand mal seizures to having a few absence seizures a day. Ryan is doing great!
News from Oliver Sacks, M.D.
April 3 is our good friend Jane Goodall’s birthdayhappy gold (79) birthday to you, Jane! If you are interested in hearing Jane Goodall speak, please visit her website. Also this month there are lots of opportunities coming up to hear Dr. Sacks speak:
--Wednesday, April 3, at 6 pm EDT, you can tune into a live-streamed interview with Dr. Sacks about hallucinations and his life as a physician-writer. Dr. Danielle Ofri will interview Dr.
April 3 is our good friend Jane Goodall’s birthday—happy gold (79) birthday to you, Jane! If you are interested in hearing Jane Goodall speak, please visit her website. Also this month there are lots of opportunities coming up to hear Dr. Sacks speak:
--Wednesday, April 3, at 6 pm EDT, you can tune into a live-streamed interview with Dr. Sacks about hallucinations and his life as a physician-writer. Dr. Danielle Ofri will interview Dr. Sacks for the NYU Humanistic Medicine colloquium at NYU School of Medicine, and you can watch it here.
--Attention, New Yorkers: our friends at the National Aphasia Association have made a limited number of free tickets available for our newsletter subscribers to their screening of a new film, "After / Words". Dr. Sacks will be on hand to sign books and introduce this moving film on Wednesday, April 10, at 6 pm. Call (800) 922-4622 or email firstname.lastname@example.org to reserve your ticket with the code Sacks10. The event will be held at the NYIT Auditorium, 1871 Broadway in New York City.
--New York Live Arts announces that they will live-stream a number of events in the upcoming Worlds of Oliver Sacks festival, starting with his conversation with Bill T. Jones on April 17. Other events in the festival will be live-streamed and/or available as audio podcasts—check the Live Ideas web page for updates.
--For those of you who like downloadable audiobooks, we are pleased to announce that Audible.com is offering unabridged recordings of A Leg to Stand On, An Anthropologist on Mars, Awakenings, Hallucinations, The Man Who Mistook his Wife for a Hat, The Mind’s Eye, Musicophilia, Oaxaca Journal, Seeing Voices, and Uncle Tungsten.
PEACE OF MIND Lecture Series & Annual Epilepsy Conference
Save The Date
FACES is pleased to introduce a series of cost-free events in support of patients, caretakers and parents who are dealing with the daily challenges of epilepsy and seizures. Our Peace of Mind events are intended to provide education, tools and resources, insight and possibly a new perspective to a community who are the foundation of the FACES family.
Peace of Mind Lecture Series
Wednesday, June 20, 2013: Navigating the School System
Presented by: Gary S. Mayerson, Attorney at Law
Annual Epilepsy Conference: Sunday, May 5, 2013
The Annual Epilepsy Conference is open to anyone interested in learning about news on epilepsy and seizures – patients, caregivers, parents and medical professionals alike. There is no cost to attend this daylong event.