May 2015

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MAY 2015 FACES E-NEWSLETTER

  1. RECIPE OF THE MONTH
  2. GLIA IN EPILEPSY
  3. MEET ANDREW
  4. SUDEP INSTITUTE
  5. TO RUN WITH PURPOSE
  6. CYCLING FOR A CAUSE
  7. NOTEWORTHY PRESS

1) RECIPE OF THE MONTH

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This month’s recipe features a healthy turkey quinoa meatball recipe. You can make a large batch of meatballs ahead of time, freeze them, and take them out as needed. Quinoa is a great replacement for breadcrumbs. It is an ancient grain that is packed with nutrition. It has 20 percent more protein than other whole grains and it contains vitamins A, E and B, calcium, potassium, magnesium and iron. This recipe is also very low in sodium – coming in at only 36mg per serving; without sacrificing flavor. Controlling sodium intake is important for overall health. Too much sodium causes water retention (bloating), puts stress on your arteries and veins, and increases blood pressure.

May is national high blood pressure education and stroke awareness month, so this is the perfect time to put the spotlight on your sodium intake. Controlling blood pressure is an important part of maintaining your health and neurological well-being.

One in three adults has high blood pressure. High blood pressure can damage the heart, brain, and kidneys without symptoms. Making lifestyle changes such as maintaining a healthy weight, staying physically active and consuming a healthy diet that is low in sodium can all reduce blood pressure.

TURKEY QUINOA MEATBALLS
By: Michele Angel

Yield: Serves 4
Nutrition for whole recipe: 653 kcals, 14g fat. 28.2g carb. 146mg sodium
Nutrition per serving: 163 kcals, 3.5g fat, 7g carb, and 36.5mg sodium

INGREDIENTS:
1 pound lean ground turkey (85% lean)
2/3 cup cooked quinoa
2 garlic cloves, minced
1 egg
¼ cup diced red onion
¼ cup arugula or parsley
½ teaspoon of Italian or dash seasoning
sea salt and pepper to taste
*Optional: Prepare 4 cups of arugula with fresh lemon, olive oil.

DIRECTIONS:
Preheat oven to 350F. In a large bowl add turkey, quinoa, onions, parsley, seasoning, egg, salt and pepper to taste. Roll into 1 to 1 ½ inch balls. Add to a prepared baking sheet with cooking spray. Bake for about 30 minutes. Serve over a lightly dressed bed of arugula or any vegetable of your liking.

2) GLIA IN EPILEPSY

WHAT ARE GLIA?

The nervous system consists of two types of cells - neurons and glia. Neurons are the electrically excitable cells of the nervous system, whereas glia (the word ‘glia’ comes from the Greek ‘glue’) perform additional functions such as physically supporting neurons and holding them in place, destroying pathogens and infection-causing organisms, removing dead neurons and supplying neurons with nutrients.

WHAT IS THE ROLE OF GLIA IN EPILEPSY?

Image of an astroycte under
the microscope. Source: Wikipedia

For a long time, glia were thought to be just supporting cells or gap-fillers. However, this view has changed, and research has shown that glia are critically important for proper functioning of the nervous system. There are multiple types of glia in the brain and they serve different functions. One type of glia known as the ‘astrocyte’ is particularly important in epilepsy. The name ‘astrocyte’ is derived from the way it looks under the microscope (‘astro’ from Greek astron = star and ‘cyte’ from Greek "kyttaron" = cell). These star-shaped cells are very important for proper functioning of neurons, and certain diseases like epilepsy can be associated with changes in the structure and function of astrocytes.

Temporal lobe epilepsy (TLE) is characterized by spontaneous, recurrent seizures and can be caused by a stroke, meningitis or a head injury. Sometimes, TLE can be associated with changes in astrocytes in a process called ‘astrogliosis’. Simply speaking, astrogliosis is an abnormal increase in the number of astrocytes and is seen in a variety of brain disorders (stroke, trauma, infection) in addition to epilepsy. For a long time, scientists weren’t sure whether astrogliosis is good or bad for the epileptic brain – experiments in the lab suggested that astrogliosis could be good or bad depending on severity and location of seizures. However, new research with the help of transgenic mouse models has helped shed light on this process and has shown that, in animals at least, astrogliosis may be a maladaptive process.

Drugs used for TLE are known as anti-epileptic drugs (AEDs). AEDs are not perfect; as they can be associated with side-effects and resistance (i.e. not everyone who takes the AEDs gets the benefit of seizure reduction). Most AEDs on the market these days act through mechanisms that involve neurons. If we learn more about astrocytes and glia in epilepsy, perhaps we could find better and novel therapies for people with epilepsy. Fortunately, scientists are intensely working on this question it the laboratory to gain a better understanding of glia in epilepsy and the ways in which they can be targeted.

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

3) MEET ANDREW

I’m different; I never understood why, until my early teenage years. A majority of society perceives the word “different” as being “special”, whether that means they are physical or mental. In actuality, my own issues stem from having mild cerebral palsy and epilepsy. Yes, it is true I face daily challenges using gross and fine motor skills or dealing with epileptic seizures, but I have also learned to navigate the world.

I was born on September 15, 1996, at nine weeks premature and I weighed only three and a half pounds. At thirty-one weeks, I suffered a stroke, and was placed in the Neonatal Intesive Care Unit (NICU) for two months. At this point, my parents were concerned for my well-being, the nurses provided them with constant reassurance, “He’s a fighter. He’ll make it.” For the next two months, I remained in the NICU until reaching the minimum requirement to come home – five pounds. Once home, I was a happy baby; a messy eater, talking at nine months as loud as a parrot, and showing my parents what they had not initially believed – hope. Although I did not walk until the age of two, I would not give up; I used a Little Tikes shopping cart and the “commando crawl” to pick myself back up, determined to overcome what the doctors told my parents I could not accomplish – walk. Finally, after almost two years of exhausting “practice”, I overcame what I was determined to do – be able to walk.

However, the challenges did not halt. Not long after my brother was born, I had my first seizure at the age of two, I was diagnosed with epilepsy at the age of two and cerebral palsy at the age of three. For years, my parents tried method after method, including many therapies, to provide me with the best life I could have – and it has worked. In addition to countless methods, we have also tried medication after medication, and I am currently on a combination of Vimpat and Onfi. Some of these medications have worked tremendously, while others have had side effects that have not worked in my favor; despite some obstacles, I am still standing here today.

Being a different kid, I learned to always stop and wonder about my surroundings. I needed to gather information about what was happening around me, and to understand my world. These skills that helped me navigate my life became second nature; I learned to transfer my thoughts into stories. Eventually, I discovered my love of writing and poured myself in to it. While I wondered and sometimes feared when my next seizure would come, I decided to escape into the world of books and writing.

When it comes to school, a majority of my teachers have been fantastic about dealing with my medical situation. Starting school at the age of three, I was placed in a special education class in the public school system – however, my parents felt I did not fit the profile of being a special education student at the time; they pulled me out and put me in a more typical school so I could interact with my peers. Towards the end of fifth grade, I was placed on Depakote for the next four and a half years – and I felt great – I had less stress, and more importantly, less seizures.

Over the years, I have had periods of time where I have felt discouraged because of my seizures. Most of my friends have their driver’s license and their biggest problem is planning their Saturday night – my biggest problem on Saturday night is my parents making sure I am safe, in my best interest. I am passionate about disability advocacy, and have taken many actions towards it. In the last two years, I have written my junior thesis on the Americans with Disabilities Act of 1990, my senior thesis on the Treatment of Epileptic Patients, and created a fundraiser known as End Epilepsy!, with a goal to eliminate the stigma and raise awareness of an extremely underfunded disorder – raising almost seven hundred dollars in a school of less than five hundred.

Now in twelfth grade and preparing myself for college, I look back on the last eighteen years of my life and realize that it’s okay to be different – even with cerebral palsy and seizures. I have come to accept the fact that I have seizures, and a story made up of challenges that I have faced and overcome.

4) SUDEP INSTITUTE

On Wednesday, April 10th 2015, NYU Langone’s Dr. Orrin Devinsky and Dr. Daniel Friedman, along with FACES board member, Warren Lammert, attended a SUDEP workshop, sponsored by the SUDEP Institute, which carries out education and awareness programs for people touched by epilepsy and medical professionals.

During the session hosted by InnoCentive, attendees were asked to create three “challenge statements”, which all focused on specific needs within the epilepsy community.

InnoCentive’s Custom Challenge Program enables their clients to develop high-profile competitions, uniquely tailored for solving big problems and encouraging breakthrough innovations.

Advocacy Challenge

The first challenge was to design a campaign for SUDEP advocacy that educates and empowers patients and families, supporting multiple stakeholders by providing an opportunity for discussions, information sharing and reporting. The program aims to efficiently message the impact of SUDEP and demonstrate the potential to influence and drive behavior change in patients, families and the medical community.

Prevention Challenge

The second challenge was to propose a method of intervention or solution that helps patients comply with taking their medication so that the risk of seizure is decreased.

Prediction Challenge

The third and final challenge was to detail the the physiological pathways that lead to death and identify a target for intervention (for therapeutic intervention or biomarker development).

The goal is to launch the Advocacy Challenge by June 1, 2015 followed by the Prevention Challenge in July and the Prediction Challenge in August. InnoCentive will rollout these challenges, and crowdsource innovative ideas and solutions from their global network of the world’s smartest people. These people will be competing to provide answers to these three challenges.

5) TO RUN WITH PURPOSE

September 2011, marked the start of my son Erik’s arduous battle with epilepsy at the vulnerable age of six months old. My wife and I quickly became familiar with EEGs, constant blood work, and repeated visits to the emergency room in full status epilepticus. Erik recently turned four years old and we’re still on our journey to find full seizure control. With the assistance of Dr. Orrin Devinsky, we are now exploring the uncharted territory of cannabidiol. We’re seeing improvements since he started it, but we haven’t achieved full seizure control.

As an avid runner, I’ve previously ran two half marathons, and numerous races of various lengths. My wife and I have found running as an outlet to the tremendous stresses and frustrations facing epilepsy. Recently, I had the incredible opportunity of running the NYC Half Marathon March of 2015 in support of FACES. To run with a purpose so close to my heart fueled all 13.1 miles. My fundraising experience was heartwarming and humbling. The outpouring of donations from co-workers, family, friends, and complete strangers was surreal. Running in support of FACES has fueled my inner passion to continue the awareness of epilepsy and FACES.

April 4, 2015, was the date of the Celtic Tribute 5K, in Long Branch NJ. The run was hosted by the Jersey Shore Running Club, benefiting the Long Branch PBA #10 and FACES. The flat, out and back course offered endless beachfront views of the New Jersey shore. Race day weather was clear, cool, and sunny. The gale force, head-on winds were unwanted by every runner, but I proudly lined up in my purple TeamFACES shirt. After the run, race organizers offered me the opportunity to address the crowd about FACES and epilepsy. Although the idea of public speaking filled me with nerves and anxiety, I persevered and proudly faced the crowd to share my story and spread awareness of FACES. With a lot of self-control, I managed to choke back the tears as I explained my personal experiences as a parent with a child battling epilepsy. While speaking to the crowd, I pledged my endless support to FACES. I will always run future races wearing my purple TeamFACES shirt. Although small, it’s a very personal commitment to continue epilepsy awareness. When I finished speaking to the crowd, I was quickly approached by fellow runners expressing their support and warm wishes.

In closing, I want to thank FACES for all they have done for my family and the epilepsy community. FACES has given me memorable running experiences, and now the opportunity to contribute to the Insight newsletter. I look forward to future running fundraising opportunities and spreading continued awareness.

Sincerely,

Erik Wettermark

6) CYCLING FOR A CAUSE

By: Dara Cohen

On Thursday April 16th ,we came together with 60 friends and family members, and went LoCo for FACES the 2nd year in a row!

We hosted a ride at SoulCycle in the West Village with hopes to gain funds and awareness for FACES. Our son Logan, who is now 3, was diagnosed with epilepsy in March 2013. Through great care from Dr. Daniel Miles at the NYU Langone Comprehensive Epilepsy Center and Dr. Erica Berg at Pediatric Associates of NYC, we realize how fortunate Logan is. He has been seizure free for just over 2 years!

Though we were only able to have 60 riders join us, countless others have been generous with their time and donations . They have helped us raise over $20,000 for FACES.

7) NOTEWORTHY NEWS

Top 10 National Press Articles

  1. New Advice On What To Do About Seizures
  2. Managing Unprovoked Seizures in Adults
  3. Epilepsy Seizures Reduced With Marijuana Extract, New York University Study Shows
  4. Cannabidiol Quells Seizures
  5. Marijuana Extract Tames Debilitating Brain Seizures Without The Buzz
  6. Clinicians give perspectives on first unprovoked seizure guideline
  7. AAN: NEW AAN/AES GUIDELINES ON TREATING FIRST SEIZURE
  8. MARIJUANA LIQUID COULD BE ALLY OF KIDS WITH EPILEPSY, STUDY SAYS
  9. NEUROPACE GIVES EPILEPTICS NEW HOPE OF LIFE WITHOUT SEIZURES
  10. The CURE-sponsored Epilepsy Genetics Initiative, EGI, has created a centralized database to hold the genetic data of people with epilepsy. It will bridge the gap between people with epilepsy, clinicians, and researchers and advance precision medicine.

The initiative will drive research into the causes and treatments of epilepsy, to ultimately find a CURE.

We, at the NYU Comprehensive Epilepsy Center, are thrilled to be one of eight enrolling sites.

CLICK HERE FOR MORE INFORMATION AND HOW TO ENROLL

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:

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 FACES forward 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

Seeking Epilepsy Patients for the study “Mechanisms and Enhancement of Learning During Sleep” (S14-00609)

We are currently seeking epilepsy patients to participate in a sleep and learning study. Subjects will be asked to sleep at the NY Sleep Institute, located at 724 E. 2nd Ave (between 38th and 39th Streets). Subjects will complete several questionnaires, participate in behavioral testing and undergo an EEG.

We are seeking epilepsy patients with a diagnosis of well-controlled partial epilepsy who are between the ages of 18-35 years old, and fluent in English. Subjects may not have ongoing night time seizures or generalized epilepsy, a sleep disorder, or current use of a psychoactive medication (such as an anti-depressant or a stimulant). Subjects must not have travelled across time zones or engaged in night-shift work for 1 month prior to participation.
Subjects will be compensated $15 per hour for participation.

For more information, please contact: Anli A. Liu MD MA anli.liu@nyumc.org or Sarah Barnard at sarah.barnard@nyumc.org /646-558-0876.

FACES is pleased to accept applications for the 2015 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 JULY 15, 2015

If you have any questions or would like for information about the program, please email FACESscholarship@nyumc.org or call Heather Wall, the Scholarship Coordinator, at 646.558.0839. Your message will be returned within 48 hours.

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