April 2016

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APRIL 2016 FACES E-NEWSLETTER

  1. WELCOME DR. LUCIA MELLONI
  2. MEET SOME NEW CEC ‘FACES’
  3. RECIPE OF THE MONTH
  4. RECENT ADVANCES IN DRAVET SYNDROME
  5. MY SADDENED BRAIN
  6. TEAMFACES AT THE HALF MARATHON
  7. DEAR ROSIE
  8. NOTEWORTHY NEWS

1) WELCOME DR. LUCIA MELLONI

A native Chilean, Dr. Melloni completed her PhD in neuroscience at the Max Planck Institute for Brain Research in Frankfurt am Main, Germany. After her postdoctoral training at the Department of Neurology at the University Clinic Frankfurt, she became a group leader at the Max Planck Institute. Her group investigated attention and consciousness, with a special interest in the question whether these functions can be trained and expanded, or even re-gained in case they are impaired, e.g., after stroke. In 2012, Dr. Melloni obtained a fellowship to perform basic research on the neural mechanisms of learning and perception in epilepsy patients at Columbia University Medical Center in New York. Since 2015, she is the head of the Intracranial Neurophysiology Group at NYU Langone, where she uses cutting edge technology to understand brain plasticity and language, with a particular focus on language lateralization in epilepsy patients.

2) MEET SOME NEW CEC ‘FACES’

Meet our new staff at NYU Langone Comprehensive Epilepsy Center

Jay Louik
Associate Research Coordinator

Jay is responsible for executing studies specifically for Responsive Neurostimulation (RNS) under Dr. Jacqueline French.

Annette Cruz
Senior Medical Secretary

Annette coordinates consultations and neurosurgeries for Dr. Werner Doyle and Alyson Silverberg, DNP.

 

Rochelle Roman
Medical Secretary

Rochelle provides administrative support for Dr. Scott Hirsch and the epilepsy fellows.

 

Patricia Tolete
Grants Specialist

Patricia provides research support assistance to Dr. Orrin Devinsky.

 

 

Aaron Smith
Medical Secretary

Aaron assists the triage phone line and coordinates the physician schedules for Dr. Orrin Devinsky and Dr. Siddhartha Nadkarni.

 

3) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

KETO CEREAL
Note: gluten-free if Fiber One is eliminated. Fiber One contains aspartame
. This high-fiber cereal combination is a quick healthy alternative to typical keto meals. It makes a great snack too!

Ingredients:

  • Cereal, Fiber One (General Mills)
  • Macadamia nuts (dry roasted with salt) - chopped
  • Pecans - chopped
  • Coconut - dried, shredded - unsweetened
  • Almond Breeze (non-dairy beverage) unsweetened – Blue Diamond
  • 36% heavy cream

Directions:

Calculate amounts for each item. Chop nuts, then weigh. In a small bowl, mix together chopped nuts, coconut and Fiber One. Stir Almond Breeze beverage into cream. Pour some or all over cereal. Drink remaining cream.

This recipe has been provided from The Charlie Foundation

Be sure to check this recipe and consult with your dietitian for any modifications. Ketogenic diets are highly individualized treatments and this recipe should only be used as a guide.

4) RECENT ADVANCES IN DRAVET SYNDROME

  • Dravet Syndrome (also known as Severe Myoclonic epilepsy of Infancy) is characterized by prolonged febrile and non-febrile seizures that appear during the first year of life.
  • The telltale characteristic of Dravet Syndrome is that seizures change over time. The first seizure could be tonic-clonic (grand mal seizure) or a clonic seizure (involving jerking movements). Status epilepticus (unrelenting seizures lasting longer than 5 minutes) may also occur.
  • Seizures are typically intractable i.e. they respond poorly to anti-epileptic medication.
  • Children may be susceptible to infections, and may have more seizures during an infection. In addition, flashing lights, emotional stress and excitement can all lead to seizures.
  • Children may exhibit developmental delays; there being a correlation between the frequency of seizures and level of developmental delay.
  • Other issues like behavioral abnormalities, sleep disturbances, motor impairment may also exist.
  • In most cases of Dravet syndrome, there is a mutation in genes that code for sodium channels. Since neurotransmission is dependent on ion channel transfer, an alteration in sodium ion transfer may lead to increased excitability and seizures. The mutation in sodium channel is ‘de novo’ i.e. it is a new mutation that didn’t exist in the family previously.
  • Seizures in Dravet syndrome cannot be cured, but are managed by a wide variety of anti-convulsant drugs. Strategies to deal with seizure emergencies are also critical. Surgery is not indicated, although the ketogenic diet and VNS have been proven to be somewhat effective.
  • A drug named fenfluramine has been shown to be beneficial in children with Dravet Syndrome. This drug releases serotonin (5-HT) and activates several [5-HT] receptors. However, the specific 5-HT receptor that the drug acts on is not known. In a recent study with zebrafish, the researchers used specific drugs to activate certain 5-HT receptors. This study was the first step in pointing towards the role of specific 5-HT receptors in Dravet Syndrome. In the future, drugs that are selective to one receptor type may be more beneficial.

As a basic epilepsy researcher, Sloka S. Iyengar, PhD used animal models of epilepsy to understand what makes the epileptic brain susceptible to seizures and comorbidities. Currently, as a clinical epilepsy researcher at the Northeast Regional Epilepsy Group, she conducts clinical trials for people with epilepsy. She is also a science writer and advocate.

 

 

 

5) MY SADDENED BRAIN

On Sunday, April 10th, 2016 at the NYU Langone Medical Center, FACES held their annual epilepsy conference. One of the panelists, Dr. Scott E Hirsch, discussed depression, co-morbidities and epilepsy. Dr. Hirsch is an Assistant Professor of Neurology, Psychiatry and Child Adolescent Psychiatry at NYU Langone Medical Center, focused on epileptic patients. He has an impressive body of research and passion for helping epileptic patients, making him the therapist of choice for people in my condition.

If you asked me if I’d be dealing with depression as a byproduct of my epilepsy when I was diagnosed 32 years ago, I honestly would not have seen the link. I didn’t understand the psychological impact that epilepsy has on the brain. Over the last year I unfortunately have dealt with personal and professional trauma triggered by events ranging from the death of a family member to an ugly professional dispute. Each of these triggered partial seizures and extreme depression. The depression affected me, my interactions with friends, family, my ability to work at full capacity and my overall energy.

Psychologists call this Situational Depression if they are referring to someone without epilepsy. When a patient has epilepsy, it can trigger Major Depressive Disorder. From both personal observations and my personal experience, I believe that my epilepsy caused the depression. But then in a vicious cycle, the stress and sadness caused unpredictable partial seizures. Even when I had a good patch, I’d find that unconscious triggers could bring back the depression.

This leads me to the hypothesis that once a negative situation occurs for an epileptic, new neural pathways are created leading the brain to generate new sad and depressing feelings independent of situations once they’ve been reconciled. Continuing anti-convulsant medications for epilepsy helps to minimize the seizures, but the depression remains even when the problem is over. There is one anti-convulsant (Lamotrigine or as it’s known by the brand name, Lamictal) that has shown positive results, minimizing both seizures and depression. This gives me hope.

It can be proven that non-epileptic, depressed individuals might improve as the situations are improved, removed or solved. Situational Depression might not need medication. But for the epileptic experiencing Major Depressive Disorder, this may not be the case. I believe this is because once the epileptic brain is traumatized, it changes its neural chemistry in the process.

So what can I do, now that I’ve been diagnosed with Major Depressive Disorder? My quality of life has suffered, plus I’ve experienced weight gain, weakened memory, poor recall, lost focus and deficits in listening and cognitive processing. I’ve taken to recording important meetings or moments so I can go back to the recording later on and make sure I accurately remember what was said. I also need to mention to people I meet socially that they shouldn’t take it personally if I forget their name or to follow up.

Frank R. Harrison is a seasoned executive who has worked for corporations spanning the Financial Services, Entertainment and New Media industries. He’s a graduate of the NYU Stern School of Business, earned his MBA from Fordham University’s Graduate School of Business and returned to NYU to earn his Master of Arts degree in Psychology and his MS in Integrated Marketing. Connect with him on Twitter @frankhealthcare or at frh2001@stern.nyu.edu

 

6) TEAMFACES AT HALF MARATHON

On Sunday, March 20th, TeamFACES had 4 athletes compete in the United Airlines New York City Half Marathon. Our athletes took to the streets of NY running 13.1 miles to help spread epilepsy awareness in support of FACES. Through their incredible efforts, his year’s half marathon team has raised almost $20,000 for the programs and services at FACES!

The FACES staff, our volunteers, and the epilepsy community are proud to have these inspirational leaders compete on behalf of our mission. Each athlete continues to provide hope to countless individuals and families with each passing race.

To read more about each runner or to make a donation today, please click here.

7) DEAR ROSIE

QUESTION: I’m about to start a new job, how do I approach my employer about my epilepsy?

Telling my employers and coworkers about my history of seizures has become less challenging over time. Similar to the majority of our generation, I have hopped around a handful of jobs over the years. Each position came at a different time in my epilepsy journey. Therefore each experience I have with this particular conversation has varied, but one consistent trait is that I always overstressed the exchange.

The first experience happened when the seizures began out of the blue and while on the job. Since my coworkers were witnesses, they were supportive as I began my journey towards finding a solution, while not questioning my ability to still function and get the job done. I remember talking with my boss after my first neurology appointment and we both were not quite sure what my next steps were but she was happy to accommodate as best as possible.

However, once I started to learn more about my epilepsy and it became clear that there was a long road to figuring out a solution, opening up to various new bosses became a bit more arduous. As you are most likely familiar with, when people hear about seizures for the first time, they tend to have the image of a dramatic scene from some movie that is far from our reality. Since seizures are different for everyone, it’s best to be clear with your employer on potential expectations. Going off the guidance of people most familiar with me, I would practice these conversations that focused on describing what my aura is, how my seizure will go down, and what assistance may be needed. Depending on the position, it can also be important to mention if you are able to drive or not. Similarly to when you open up to your friends, the more confident and relaxed you come off in this discussion, the more comfortable and supportive your new boss will be.

One of my former employers was not just sympathetic but also interested in learning more about epilepsy in general. That encouraged me to open up more, give a warning when switching medications and the side effects that may be visible. However to be clear, sharing such specific information is neither necessary nor mandatory, so do not feel pressure to follow such advice.

These days I am more experienced in the world of epilepsy- so the most recent conversation with the employer at my new position was quite casual. Even though a seizure can still come on at anytime, being more aware of my unique health and embracing the fact that epilepsy does not hold me back from pursuing my passions has helped make such conversations just a line on my “To Do” list and not the center of stress or attention.

‘Dear Rosie’ is a monthly contributor to our newsletter. She is interested in hearing from the community and would be happy to answer any non-medical related questions that you may have. Email facesinfo@nyumc.org with your questions or suggestions.

8) NOTEWORTHY NEWS

Top 10 National Press Articles

  1. Marijuana-Based Drug Found to Reduce Epileptic Seizures
  2. Medication Derived from Marijuana Effective in Epileptic Seizure Reduction, According to Clinical Trial
  3. Rare Epilepsy Yields to Cannabis Drug
  4. Tips for Surviving the Switch to Daylight Saving Time
  5. Positive Results of Marijuana-Based Drug Trial Announced
  6. In N.F.L., Deeply Flawed Concussion Research and Ties to Big Tobacco
  7. Report: The NFL’s Concussion Research Was Even Shoddier Than Anyone Thought
  8. Cannabis-Derived Drug Shows Promise for Kids with Epilepsy; GW Pharma Stock Doubles
  9. The Gray Lady on Gray Matter
  10. Harrison Ford to Auction off Han Solo’s Coolest Accessory for a Deeply Personal Cause

2015 Hoyer Lecture Available on AES YouTube Channel-CLICK HERE TO WATCH

This is a presentation that focuses on the delay that often occurs between when people start having seizures, and when they get diagnosed.

Many people are not aware that seizures can take forms other than a major convulsion-When people see or experience smaller seizures, they are often confused and don’t know where to turn.

In our ongoing Human Epilepsy Study, we have discovered that many people are not diagnosed until they have months to years of often unnecessary seizures.

There is an urgent need to increase epilepsy education to the public and bring epilepsy out of the shadows.

FACES is pleased to accept applications for the 2016 College Scholarship Program. FACES will provide financial support for the education of incoming freshmen or currently enrolled college or graduate students affected by epilepsy and seizure disorders. We are seeking to recognize the personal accomplishments of those living with epilepsy during their college journey. Awarded scholarship amounts will vary depending on the applicant’s financial need.

THE DEADLINE TO APPLY IS MAY 9TH, 2016

If you have any questions or would like for information about the program, please email FACESscholarship@nyumc.org.

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.

PLEASE CLICK HERE TO VIEW APPLICATION

THE DEADLINE TO APPLY IS JUNE 3RD, 2016

If you have any questions or would like more information about the program, please email FACESscholarship@nyumc.org. Your message will be returned within 48 hours.