March 2015

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MARCH 2015 FACES E-NEWSLETTER

  1. CEC SPOTLIGHT: CRYSTAL WILLIAMS
  2. RECIPE OF THE MONTH
  3. A FACES APARTMENT PARENT PERSPECTIVE
  4. SUNDAY TEAM IMPACT PRESS CONFERENCE
  5. DR. FRENCH’S TRAVELS
  6. THE HIPPOCAMPUS IN EPILEPSY
  7. EVALUATIONS AND ACCOMMODATIONS, A MOTHER’S POINT OF VIEW
  8. PRINCESS DAY
  9. A DREAM THAT CAME TRUE
  10. NOTEWORTHY NEWS

1) CEC SPOTLIGHT: CRYSTAL WILLIAMS

CRYSTAL WILLIAMSCrystal has a legal background with a B.S. in Legal Studies from the John Jay College of Criminal justice. After pursuing her degree, she transitioned into the medical field.

Crystal joined the NYU Langone Comprehensive Epilepsy Center in February 2014 as the Front Desk Receptionist. In May 2014, she was promoted to Administrative Assistant. She excels at every aspect of her job because of her passion to satisfy all of her patients and superiors. Her role assists Dr. Orrin Devinsky, Dr. Derek Chong, Dr. Anli Liu, Dr. Patricia Dugan, Erin Conway, NP, and Kimberly Parker-Menzer, NP. She coordinates the clinician’s schedules, requests prescription refills, and provides general assistance to patients. Crystal always makes sure that all of her patients get a response to their inquiries in a timely manner.

 

 

2) RECIPE OF THE MONTH

By: Julie Devinsky

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

March is National Nutrition Month, which is an educational campaign by the Academy of Nutrition and Dietetics (AND). For some of us, the winter months mean eating our favorite comfort foods and lots of couch time. It’s easy to fall behind, but spring is around the corner and March is the very best time to kick things into shape for 2015. This year the AND is pushing Americans to “bite into a healthy lifestyle”. Ditch the fad diets, juice cleanses, and embrace a new (and healthy) way of living. Be educated about what food you are eating, ask questions and most importantly, get the right answers from professionals
and evidence-based research. Start slow and make a healthy plan work for you around your schedule and preferences, whether that is meal planning in advance or being able to eat well on the go. Be sure to boost up your physical activity even if it is just 20 or 30 minutes a day, every kick, crunch, and ounce of sweat can make a difference!

Why is this recipe nutritious? This granola recipe is chock full of healthy fats, protein and fiber without the sugar. It is loaded with coconut, which is proven to help improve cardiovascular health by lowering your bad cholesterol and won’t spike your blood sugar -making it an ideal breakfast or snack to keep you satisfied!

GRAIN-FREE GRANOLA

Nutritional Information (per serving) calories: 205: total Fat: 15g; saturated fat: 5g; monounsaturated: 4g; polyunsaturated: 5g; sodium: 5mg; cholesterol: 0mg; total Carbohydrates: 6g; dietary Fiber: 4g; sugars: 1g; protein: 5.3g

Ingredients:
2 cups unsweetened coconut flakes
½ cup flaxseed (or chia seeds)
¾ cup sunflower seeds
½ cup pumpkin seeds
¾ cup sliced almonds
4 tablespoons coconut oil, melted
3 teaspoons cinnamon or cocoa powder
2 tablespoons honey or maple syrup (optional)

  1. Preheat oven to 350°F. Line a baking sheet with parchment paper.
  2. Place coconut flakes, seeds, and nuts in a large bowl.
  3. Melt coconut oil (the microwave is the easiest), add cinnamon then pour over nut mixture. If you are adding honey, add it here.
  4. Mix thoroughly with a spatula so everything is lightly coated in oil.
  5. Spread the granola as a thin layer on the baking sheet.
  6. Bake for 20 minutes or until golden brown.
  7. Store in an airtight container.

Feel free to toss in dried fruit or exchange some of the nuts with your favorite types!

3) A FACES APARTMENT PARENT PERSPECTIVE

By: Darla (Aaron’s mom)

TODAY’S FORECAST: Mostly Cloudy
When you give birth to a perfectly healthy and beautiful baby boy, with hopes and dreams for his future, it's a tough pill to swallow as you gaze up at the black (seizure) cloud that looms over his head day and night by the time he turns 3. Whether a steady shower of myoclonics, or lightning strike tonic-clonics that jolt the life out of him for a spell, the unstable atmosphere keeps you on your toes and on your knees. As a parent you watch, you pray, you cry, and you feel helpless.

Fast forward 23 years and the storms of life don't quite, rattle you as they used to, but the dreams never die. Aaron's life wasn't supposed to be like this. What happened? No answers, no cure - only half attempts and well-educated forecasting at finding the right concoction to calm the storm…until the next one blows in.


Aaron playing golf

Lennox Gastaut Syndrome (LGS) is relentlessly hard to control. Weathering this rare and severe seizure disorder is like hurricane season all year long – although there’s no Doppler radar to let you know one’s coming. But regardless of our outward circumstances, Aaron remains sweet, compliant, generous and loving - never complaining or whining or asking for much. We are thankful for the way God made him and for granting us the grace and strength to handle the variable weather patterns of life.

We have recently discovered a silver lining within the compassionate hearts of those who are deeply invested in finding a cure for seizure disorders - the “storm chasers”. We have had the privilege of meeting so many of them throughout our journey. They are the LGS parents and caregivers who scour the internet, share honestly and speak out for their kids, the LGS Foundation and pharmaceutical companies, like Lundbeck, who actually care about LGS families, and medical professionals changing lives through cutting edge research and treatments.

Each in its own way directed our path to the big city on the other side of our state. A seven hour one-way trip, a year and a half ago, began the journey that is changing the jet stream of our son's future. The sun is peeking out from behind the cloud as we experience record-breaking seizure control through a study drug. What a privilege! What a blessing!

And if that weren't enough, we have been blessed with the help and support of FACES and NYU Langone Medical Center, as if they were holding an umbrella over our heads to keep us dry until the storm passes. We enjoy our trek across scenic New York to see Dr. Daniel Friedman and the NYU Langone Comprehensive Epilepsy staff, and our home away from home on Lexington and 37th, (FACES Apartment), and our adventures in the city that never sleeps. And, not to mention, there is less snow, warmer temperatures and more sun this far east!

The privilege of staying so close to the hospital, doctor’s office, parking garage, and can’t leave out - pizza and bagels - make the climate change from our humble country home in Western New York to the largest city in the east almost a breeze. Having such a nice place to stay the night has been like “Cloud 9” for these weary travelers.

It's just not attainable to express our gratitude enough or repay those who have helped us along the way, so we pledge to continue in the fight for a cure, jump in and serve, give, pay it forward and "comfort others with the comfort we have received." (2 Corinthians 1:3-4). We are blessed.

“The sun'll come out tomorrow...”

4) SUNDAY TEAM IMPACT PRESS CONFERENCE

By: Tom Maher

In early December, the New York University Hockey Team welcomed 9-year-old Sean Gargan as a new member of the team. This was made possible by Team Impact, a not-for-profit organization that matches children facing a serious illness with a collegiate sports team. Members of the team have visited Sean, who suffers from epilepsy in the hospital and Sean has also attended practices and games when able.

 


Sean Gargan and the NYU Hockey Team

Sean was quick to develop a great friendship with senior defenseman Eric Basmajian, who is a cancer survivor. “Sean is always high-spirited, regardless of the situation,” Basmajian said during Sean’s drafting ceremony. “The way he conducts himself has had a profound impact on us here at NYU.” Sean was officially drafted by the team before their game against the Central Connecticut State Blue Devils and presented with his jersey. Sean’s father, John, spoke about the impact the team has had on his son through his struggles. “Whether it was visiting Sean in the hospital or researching epilepsy and then taking the time out of a demanding work schedule and a demanding academic schedule, it was inspiring for us to see them making time for someone they just met,” John said. “Giving Sean, through his bad condition, a chance to say, ‘I’m part of something that’s somewhat normal’…he hasn’t had that for several years so it’s an inspiration to him.”

 

The Gargan family introduced the team to FACES, which served as the team's "charity of the game" during their November 7th game against the Rensselaer Polytechnic Institute Engineers."

 

 

5) THE TRAVELS OF DR. JACQUELINE FRENCH


With my colleagues on the seizure classification task force in London-Celebrating completion of a new classification scheme that will hopefully advance the field.


The European Medicines Agency, in London (European equivalent of the FDA)-Here for a meeting to advance new trial designs.


In Bulgaria for investigator training.


With collaborators in Australia, hopefully advancing epilepsy devices.

6) THE HIPPOCAMPUS IN EPILEPSY

By: Sloka Iyengar, PhD

The hippocampus gets its name because of its resemblance to a seahorse (in Greek, hippos for horse; kampos for sea monster). The hippocampus is located in the temporal lobe. We have two hippocampi – one on each side of the brain. The hippocampus is critical for learning and memory. Specifically, the hippocampus is important for spatial memory (or memory regarding one’s environment and spatial orientation). By doing experiments in rodents, scientists found that the hippocampus consists of neurons that act as ‘place cells’. These neurons become active when the rodent passes through a certain part of the environment.


Hippocampus (blue) located in the temporal lobe of the brain (image credit – Wikipedia)

The hippocampus is implicated in a certain kind of epilepsy, called mesial temporal lobe epilepsy (mTLE). This is because in TLE, seizures originate (or involve) the hippocampus. TLE is ‘acquired’ epilepsy – this means that the cause for TLE (e.g. stroke, meningitis or head injury) is acquired in adulthood. This is in contrast to genetic epilepsies, where the individual is born with defects that cause epilepsy.

 


Resemblance of the hippocampus with a seahorse (image credit – Wikipedia)

Since the hippocampus is evolutionarily conserved in rodents, scientists can figure out what goes wrong in the hippocampus in epilepsy by performing experiments in rats or mice. In this way, we have found that there is a loss of neurons in TLE. These alterations are quite specific, as there is preferential loss of cells that inhibit, or dampen down activity. In the absence of these inhibitory cells (called interneurons), excitability goes haywire causing more seizures. Given that the hippocampus is important for learning and memory, it is not surprising that in some individuals with TLE, difficulties in learning and memory may be noticed.

The first line of treatment for TLE is anti-seizure medication. These drugs are useful but are associated with a few problems: 1.They do not provide relief from seizures in everyone with TLE. One-third of the patient population has refractory epilepsy (i.e. epilepsy that does not respond to medication). 2. These drugs have side-effects and 3. They stop seizures without correcting the underlying problem that causes seizures in the first place. Alternative options for TLE are surgery and dietary methods such as the ketogenic diet.

In summary, although we know quite a bit about the hippocampus, scientists are working hard to comprehend the role of the hippocampus in TLE better. For example, understanding exactly how the hippocampus becomes prone to seizures will give us new avenues of curbing seizures and epilepsy.

Sloka S. Iyengar, PhD is an epilepsy researcher and has been investigating mechanisms that can cause groups of neurons to generate and sustain spontaneous seizures. For her graduate work, Sloka worked with Dr. David Mott where she used electrophysiology to study epileptic circuits. In New York, Sloka conducted her postdoctoral research at the Nathan Kline Institute where she examined the role of a part of the brain called the hippocampus in seizures. Presently, she has switched focus from basic epilepsy research to clinical research with Dr. Jeffrey Politsky at the Northeast Regional Epilepsy Group. In addition to research, Sloka also has a strong interest in epilepsy advocacy and education

7) EVALUATIONS AND ACCOMMODATIONS, A MOTHER’S POINT OF VIEW

By: Peggy Quinlin

A diagnosis of epilepsy and a learning disability can be very emotional for any parent, myself included. Children with epilepsy are at increased risk of having a learning disability. In addition, many students with epilepsy need school accommodations. Lack of proper accommodations can make life very difficult for students living with epilepsy and their parents. According to the National Institute of Neurological Disorders and Stroke, 20 percent of epilepsy patients have intractable seizures — seizures that do not respond to treatment. Frequent absences and missed classes due to hospitalizations, medical appointments, seizures and exhaustion are a major problem for many students with epilepsy. 

When my son was in middle school he had over 150 seizures a day consisting of absence seizures, myclonic and grand mal/generalized tonic-clonic. Ryan would have to be picked up two to three days a week due to a seizure or exhaustion. Being a certified teacher with a Masters Degree in Education, I assumed the school would accommodate to Ryan’s condition and be flexible. But, that wasn’t always the case. Some teachers were fantastic and accommodated his frequent absences by modifying tests, class notes, assignments and giving Ryan extra help. Unfortunately, not everyone is as understanding. 

Lack of epilepsy awareness and how it affects learning is often a major obstacle. I found that educators, parents and administrators need to “think out of the box” when creating an educational plan for a student with epilepsy. I found the following accommodations and modifications helpful:

  1. Flexible schedule because my son had multiple seizures in the morning. Starting at a later time was very helpful.
  2. Frequent breaks due to exhaustion.
  3. Modifications made to test, quizzes and homework can make school more manageable for students and reduce stress.
  4. Also, you can check your state regulations for exemptions for children who have chronic illnesses. You can call your State Department of Education to find out your states policy. Your school district may suggest a Section 504 or an Independent Educational Plan for your child.

The first step in coming up with an educational plan for your child usually starts with an evaluation. An evaluation may uncover a learning disability(s) that may entitle your child to special education services, accommodations and modifications. You may want to read up on Section 504 and Independent Evaluation Programs (IEP). An IEP and Section 504 are not the same thing. The U.S. Department of Education is a good place to find information. In addition, a more "parent friendly"place is the website: http://www.ldonline.org/. This site not only explains the difference between the two, but gives info on how to initiate the process of getting a 504 plan or IEP. Also, there are very well -written articles on many of the disabilities mentioned in the article.

There are different types of evaluations. An independent neuropsychological evaluation is a comprehensive evaluation that gives the individual’s current level of functioning and may identify instructional methods, accommodations and services. A neuropsychological evaluation can be a powerful tool for parents when dealing with the school district but neuropsychological evaluations are costly and out of reach for many individuals.

A parent can initiate an initial evaluation by the school district and it’s free. A teacher can initiate a request for an evaluation if a disability is suspected but a parent can also initiate a request. You may want to familiarize yourself with evaluations and school responsibilities under IDEA Child Find. This could help you with the wording of the request. If your request continues to be ignored, I always found it helpful to mail your letter with the regulation attached and highlighted to the head of special education and principal.

The school doesn’t have to wait to see if the student fails before an evaluation is done. Students that perform exceptionally well academically can also have disabilities, such as dyslexia (reading problems), dysgraphia (handwriting problems), A.D.D., autism spectrum disorder or emotional problems. Some students receive learning interventions such as Response to Intervention (RTI). It’s important to know that “Response to Intervention (RTI) should not be used to delay or deny an evaluation”, according to the U.S. Department of Education.

By the time my son went to high school a plan was in place in addition to a phenomenal school nurse who kept me in constant contact and made sure she knew where Ryan was at all times. We put together a Seizure Action Plan from The Epilepsy Foundation of America. She made sure that every teacher knew when Ryan was absent or missed a class. As chaotic as life was at that time it was manageable because there was a plan in place.

The great news is that Ryan has been seizure free for almost two years thanks to the hard work of Dr. Devinsky and the amazing staff at NYU.

8) PRINCESS DAY

By: Georgia Gordon

During sophomore year, at Dwight School you are required to do something called a “Personal Project”. This is a project that lasts throughout most of the year and is about something that is important to you, and hence the title, is personal.

For my personal project, I chose to create something called Princess Day. The aim of this project was to make girls feel like princesses. First of all, I do not believe in age. I believe age is just a number. People might say that princesses are for little girls. I do not think that anyone is too old to be a princess. Branching off of this this idea, I decided to tie it into something extremely personal. I connected this idea of princesses and a disorder of what I have called epilepsy.

Princess Day was also a way to say that we have epilepsy; however, epilepsy does not have us. We are able to do all the things that people who don't have epilepsy do. We are able to overcome challenges and they only make us stronger and enlighten us. Plus, it was even better because we got to take pictures and be with people we could relate to.

I worked so hard on this project. I spent months planning Princess Day. I made a menu based on the ketogenic diet that catered to each girl. The night before I went shopping, decorated my house, and even made a ketogenic cake! Princess Day began when the girls arrived. We started with some introductions and cool icebreaker games. We all sat and talked with the girls and all their moms for about a half hour. Then the makeup and photo shoot began. Following the makeup, I took individual headshots of each girl, and we also took some group photos. The aim of the day was to convey the idea that regardless if you have epilepsy or not, we are all the same and that everyone should deserve to be treated like a princess. The day was beyond a huge success and I am extremely proud of myself for the hard work and dedication I put in to make this project possible.

This project meant so much to me for so many reasons. I would like to thank my mother and father, my babysitter, my two doctors; Dr. Orrin Devinsky and Dr. Judith Bluvstein, FACES Executive Director, Pamela Mohr, and most importantly, my project advisor Ms. Katagiri. These people helped make this project possible and I am so grateful.

9) A DREAM THAT CAME TRUE

Back in 2013…

FACES philantropist, Lannie Lipson helped enrich the life of a child living with epilepsy by sponsoring a seizure assistance dog. The family wrote:

“Because of you, our future will be changed forever. Our daughter’s future will be changed forever. After hearing what you have done, it has helped me realize that there are still people out there who are as loving, willing and as giving as our family is”

PRESENT DAY

It was just over a year ago that our family returned from a two-week visit to Ohio that changed our lives. After meeting an amazing group of people and a dog named Kiki, we transitioned from a family that “stayed to themselves,” to one that advocates for epilepsy awareness and the use of service dogs for seizure alert and response. We now stand up for the rights of our daughter, Savanna, and her beloved service dog.

When we started training, Savanna had been seizure-free for three months. Kiki bonded with our daughter right away and, on the third day of class, the dog alerted us to Savanna’s unexpected seizure. I sat there in awe, crying, smiling, feeling as if my heart would burst. Kiki had just met my daughter days before, and yet she was aware of an oncoming seizure that could not be predicted by me, my husband or the doctors. Unbelievable! If I ever had doubts about using a seizure alert dog, it was that moment that convinced me! I had witnessed something amazing.

Currently, Savanna is not seizure-free. On September 11, 2014, she began having various types of seizures which occurred three or more times a day, and it was Kiki who made us aware that changes were taking place. She knows Savanna so well that even during Savanna’s postictal state, when she is not her nicest self, Kiki lies with her exhausted friend and lets Savanna use her as a pillow.

I usually sleep with one eye open, but Kiki has just as much of a motherly instinct as I do, so one day I might even sleep with both eyes closed. I look in on Savanna multiple times during the night and I see my two “girls” lying together—Savanna is wrapped inside Kiki’s four paws and Kiki rests her nose on Savanna’s face. Before I leave their room, I kiss them both and talk to Kiki. While that might sound peculiar to some people, I know that Savanna is our girl—she belongs to Kiki as well as to us. Never did I think I would trust the instinct of a dog as much as I trust my own. I challenge people who don’t believe that dogs can have an uncanny ability to watch over a person in need. They just have to see what we have seen.

Today “the girls” are in kindergarten and are becoming quite a handful. Savanna wants to lead Kiki and give commands; so, while my daughter holds a short leash, I control a long one. It will take some time for them to learn to work together in school, but Kiki is doing great so far. For example, when Savanna sings and moves to music in class, Kiki stands so close to her, that sometimes Savanna trips. But Kiki is protecting Savanna the way in which she was trained, and she has learned instinctively to protect Savanna in other ways, such as responding to Savanna’s reaction to pain.

Most teachers and staff members at school are accepting of Savanna and Kiki’s relationship, although most teachers don’t always like the distraction of having a dog in the classroom. Despite this, the other children have been fabulous about not shouting for Kiki or petting her. Many ask questions and feel as if she belongs to all of them. In fact, Kiki comes to the health room every day because she knows that a diabetic boy tests there before lunch. One day, she was adamant that we go immediately to the health room; sure enough, the diabetic child was there and feeling ill. Kiki knows her job is to protect, so that was what she did. She lay on his lap in order to keep him safe—the way she would act if a grand mal seizure should occur. The boy’s mother is currently considering getting a service dog through 4 Paws for Ability.

Every day I say that Savanna and Kiki are changing the world. People smile more and feel more relaxed when Kiki is around…and the girls are changing rules—bringing about updated policies…and making the news. Rather than “flying under the radar” and shying away from public scrutiny, I now take time to answer questions from those who might benefit from having a service dog. I’ve been asked to speak to classes and Boy Scout troops, and

I do—every chance I get!

Needless to say, Kiki is just remarkable. She is part of our family—one of us. Coming from the best organization that trains service dogs, she is everything we expected and more. She has an amazing heart and, in addition to giving our family confidence, she is the reason conversation

 

10) NOTEWORTHY NEWS

Top 10 National Press Articles

  1. MY OWN LIFE
  2. CAN SMARTWATCH DETECT EPILEPTIC SEIZURES?
  3. SENT HOME TOO SOON? THE DIFFICULT ART OF HOSPITAL DISCHARGE
  4. SURPRISING DONATION HELPS GIRL IN NEED
  5. MANUFACTURER SAYS THEY WILL SHIP CANNABIS OIL IF MEDICAL MARIJUANA BILL IS PASSED
  6. MONITORING EPILEPSY IN THE BRAIN WITH A WIRELESS SYSTEM
  7. LAKE PARK GRANDMOTHER ADVOCATES TO CHANGE IOWA'S MEDICAL CANNABIS LAW
  8. CYBORGRX: HOW SMART IMPLANTS COULD CHANGE MEDICINE
  9. TWIN CITIES STARTUPS TEAM UP ON EPILEPSY-WELLNESS TECH
  10. RESEARCH IN THE NEWS: SEIZURES KNOCK OUT BRAIN AROUSAL CENTERS

 

 

 

 

Epilepsy is one of the world’s most common neurological diseases, but it remains one of the least funded and recognized. By June 1, 2015, FACES would like to raise $100,000 to help foster epilepsy and seizure awareness, but we need your support!

 

You can help move FACESforward by joining the 2015 campaign – moving us one step closer to finding a cure.
We encourage you to:We encourage you to:

 

DONATE in honor of a friend, a doctor, or yourself.

 

CREATE your own FACESforward 2015 Fundraising Page.
Tell your story and encourage friends & loved ones to give toward your personal goal!

 

PROMOTE FACESforward 2015 by telling others about it, and encouraging them to participate! E-mail everyone you know!

 

 

SHARE the link on your Facebook, LinkedIn and Twitter profiles, and in your e-mail signature.

 

 

Thank you for helping the FACESforward 2015 Campaign

 

PLEASE CLICK HERE TO VISIT THE PEACE OF MIND LECTURE PAGE

 

 

 

Click here to apply today! 

Deadline to apply is April 13, 2015