September 2014

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SEPTEMBER 2014 FACES E-NEWSLETTER

  1. CEC SPOTLIGHT: GINA WIESNER
  2. RECIPE OF THE MONTH
  3. WELCOME REBECCA KORNSTEIN/ NAKO ISHII IS PROMOTED
  4. LETTERS OF HOPE
  5. PAME CONFERENCE 2014
  6. CAMPING WITH SPECIAL NEEDS AND A KETOGENIC DIET/ JOSEPH PADULA
  7. FUNDRAISING CORNER: ISHNA’S COOKBOOK & SAMSON’S BAR MITZVAH
  8. MEET JORDAN COLLINS: A FACES COLLEGE SCHOLARSHIP RECIPIENT
  9. FACES NOTEWORTHY PRESS 10) MAKING A NEW FRIEND

1) CEC SPOTLIGHT: GINA WIESNER

In the three years Gina has been with the Epilepsy Center, she has been fortunate to work with a highly respected group of professionals and individuals. She is currently the administrative assistant to the NYU Comprehensive Epilepsy neuropsychologists, William Barr, Ph.D.; Chris Morrison, Ph.D.; and William MacAllister, Ph.D. In addition, she is the administrative assistant to neuropsychiatrist, Scott Hirsch, MD.

Because Gina has always enjoyed working with and helping people, it is not surprising to learn that she has taught english as a second language to adults and children in Ecuador. Since coming on board at the Epilepsy Center, she has learned a great deal about epilepsy and its effects on patients. Deriving great pleasure from assisting patients and their families, Gina is a calming influence when responding to questions and dealing with frayed nerves..

2) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

Here are two light summer recipes for your end of summer BBQs or get togethers. Serve the peaches as a dessert or on top of the Kale salad. Peaches are the best from June until early September, so this is your last chance at getting the juiciest varieties! Peaches are also rich in fiber, vitamins A, B, C, and E. They contain powerful antioxidants, especially chlorogenic acid. This type of antioxidant is largely concentrated in the peach’s skin and flesh that can help reduce inflammation and control the body's aging process. This peach recipe also incorporates coconut oil. There has been a lot of buzz about coconut oil recently. Coconut oil’s health benefits are controversial because it contains saturated fat (an unhealthy fat), however, virgin coconut oil is high in lauric acid, which is a saturated fat that’s classified as a medium-chain fatty acid; it can raise both “good” and “bad” cholesterol levels. There is some preliminary evidence suggesting that coconut oil intake may be associated with a neutral, if not beneficial, effect on cholesterol levels. So, although it is a saturated fat, it usually does not have a negative impact on cholesterol levels. Furthermore, coconut oil is being studied for its medium chain fatty acids, which are touted as “brain food”. Coconut oil is being used in research for many neurological disorders, including epilepsy!!

Kale Salad

Nutrition Facts: (makes 2 servings, per serving): 252 calories, 29.4g fat, 30.7g carbohydrate, 11.3g fiber, 5.8g protein

Ingredients:

1 large bunch of kale
Juice of 1 fresh lemon
3 tablespoons of extra virgin olive oil
½ cup chopped walnuts
¼ cup chopped dried fruit of your choice
Salt and pepper to taste
*Optional- parmigianino regianno cheese

Directions:

  1. Tear kale off the vein into bite-sized pieces and place in a mixing bowl
  2. Coat kale leaves with lemon juice, olive oil, walnuts and dried fruit. Season with salt and pepper
  3. Massage leaves in dressing for a few minutes
  4. After the kale mixture has marinated toss and serve

Summer Grilled Peaches

Nutrition Facts (4 servings: per serving): 214 calories, 14g fat, 25.2g carbohydrate, 2.4g fiber, 1.5g protein

Ingredients:

4 peaches
4 tablespoons of coconut oil
4 tablespoons of raw honey
*Optional- a dab of Greek yogurt

Directions:

  1. Preheat grill to medium
  2. Halve and pit peaches then coat them lightly with coconut oil
  3. Place them on the grill cut side down
  4. Grill for 3-4 minutes until grill marks appear
  5. Flip and grill the other side. Serve warm, with a drizzle of honey
  6. If desired, add a spoonful of Greek yogurt

3) WELCOME REBECCA KORNSTEIN!

Rebecca Kornstein joins FACES at NYU Langone Medical Center as the new Project Coordinator. Rebecca graduated from the University of Delaware with a major in marketing and a minor in advertising with a concentration in communications. Throughout her college experience, Rebecca assumed the role as liaison between her sorority, Alpha Epsilon Phi, and the B + Foundation (an organization that helps children and their families fight childhood cancer by providing research grants to find a cure). During Rebecca’s reign as chapter representative, her sorority made history by donating over $51,000 dollars to the organization’s biggest fundraising effort, UDance.

After gaining experience in social media, event planning, and managing an array of clients at Corbin-Hillman Communications, Rebecca is ready to change gears. She is looking forward to working with the FACES community.


NAKO ISHII IS PROMOTED

Nako Ishii has been promoted to Grants Specialist—dividing her time between the Comprehensive Epilepsy Center and FACES. Her primary responsibilities will be preparing proposals for various grants, editing medical manuscripts for journal and book publications, and working closely with the research funding team to acquire the financial support needed for the studies and trials conducted at the Center. Nako will continue to oversee and manage the always-anticipated annual Game Day for FACES, as well as assisting with some specialized online projects.

 

 

4) LETTERS OF HOPE

Do you have a letter of hope you’d like to share in our future newsletters? If so, please contact Ms. Robin Dunn Fixell at rdunnfixell@yahoo.com for more information

 

PERI’S STORY

When I was two years old, I had my first seizure, lasting a horrifying 45 minutes. At the hospital, my parents and I met the amazing Dr. Wisoff and I was put on medication.

Over the next eight years, everything seemed fine--until I hit puberty. At the age of 10, I started having seizures more often; again, I was put on meds to stop them. Every time I had a seizure, doctors would increase my dosage.

Unfortunately, as I grew older, my seizures got worse. The entire right side of my body would weaken and it would shake and jerk for about a minute or two. When I returned to school following a seizure I had during class, people kept asking, "What happened? Why were you shaking and jerking?" Later in the year, while I was taking the math portion of the NYC State tests, guess what I had?

Doctors kept raising my medication levels, until I was taking about 68 milligrams per day. Always tired, I couldn't keep my thoughts straight and I was also depressed. It got to the point where my mom played basketball with me just to get me out of the house.

At this point, my mom and dad decided to take me back to Dr. Wisoff. When he started talking about surgery, I responded: "WHAT!" As a teenager, I never thought about surgery as the answer to my seizures. But we talked to my incredible doctor, Dr. Bluvstein, and she not only agreed, but answered every question I had. That July, while we stayed in our summer house, my parents had conference calls with doctors and neurosurgeons to discuss details and upcoming meetings. In addition, my family (including my twin brother and my younger sister) visited the Boston Children's Hospital. My parents explained to me that there would be side effects of the surgery, and I understood.

When it was time for my surgery, and I was wheeled into the operating room, I wasn't scared or nervous; I felt confident that the doctors would do an amazing job. The surgery took seven hours, and when I came out of the operating room, my parents asked me to move my right arm. I did. They asked me to move my right leg. I did. They asked me to speak, and I spoke. My parents and I were so happy to learn that I would recover completely, and I had no doubt I would. Two weeks after I was taken to the Rusk Rehabilitation Center (where I met another terrific doctor, Dr. Sukov), I was released from rehab.

It is nearly a year after my surgery and, although I still need to strengthen my right arm, I am able to swim and play sports...and I have not had one seizure. I am really happy that I chose to have the surgery and I am so thankful to Dr. Bluvstein, Dr. Wisoff and Dr. Sukov, as well as the other amazing doctors and nurses too (numerous to name).

As a result of my experience, my brother and I have joined the Youth Advisory Council, a volunteer program at NYU. Grateful for everyone's help and support, we would like to give back and help others like me.

THE JOURNEY TO THE INDEPENDENCE I HAVE BEEN WAITING FOR
By: Alexandra Nicklas

Like 95% of teenagers, when I turned sixteen years old, I was ecstatic about finally being able to get my learner’s permit and driver’s license. The thrill of having the independence to drive was something I can’t even put into words. I was happy to think that I could now tell people that I would soon be a licensed driver. My parents have a house in Bridgehampton and Southampton, so having my driver’s license would enable me to get around without having the dependence of others driving me. I remember the summer after my sixteenth birthday studying to get my learner’s permit. I studied the driver’s manual from front to back and took all the practice quizzes on the DMV website. When I was ready to take the test, my mom took me to the DMV office in Riverhead, NY and I passed the test. With my learner’s permit receipt from the DMV, I was now able to practice driving with my mom. However, having a medical condition of a traumatic brain injury with secondary right hemiparesis (paralysis of the right side of the body), cognitive deficits and partial epilepsy meant that I would need to undergo neurological driving evaluations to determine my cognitive strengths and weaknesses to see if I could be a safe driver. Additionally, specialists would need to determine if I would need special car equipment. I underwent these evaluations at The Kessler Institute in New Jersey. My performance on the evaluations revealed that I had the adequate cognitive functioning needed for driving. The only type of special car equipment I would need would be a spinner wheel knob to help with making precise turns. This was all good news, but fast forward four years and I still hadn’t gotten my license yet.

Once that summer and the proceeding summers ended, I resumed my life in Manhattan. Going to school, working hard, applying to college, graduating high school, and transitioning to college became my main priorities. This left me with no time to practice my driving skills. Fortunately, the luxury of living in Manhattan with public transportation at your fingertips allows for no need for me to drive. In the summer months while I was out in the Hamptons, I continued practicing driving and my mom carpooled my friends and I everywhere. At this point, I didn’t mind not having my license yet. In fact, I realized that many of my friends were in the same situation. However, there were occasional times where I was stuck not being able to go somewhere and I had to depend on unreliable taxi services or others to pick me up. This started to get frustrating as I got older and knew that I needed to act on getting my license.

After graduating college this past February, I had the time to practice my driving skills in depth to take my road test. I took professional driving lessons and the five hour pre- licensing driving course. On May 22nd, 2014, I took my road test and passed the test to drive!

The independence that I had been excited about since I was sixteen was here! As a new driver with a medical condition, during the first month of driving, I was anxious and concerned. I knew that my anxiety would go away the more driving I did. I persevered in becoming a confident driver. This summer, I have been driving to my tennis club, taking friends out and running errands on my own. Being a licensed driver has given me more independence and has improved the quality of my life indefinitely. It feels amazing!

5) 2014 PAME CONFERENCE

By: Sloka Iyengar

A four day long meeting to understand the mechanisms underlying mortality in people with epilepsy was held in Minneapolis from June 19-22, 2014. This meeting, called the PAME (Partners Against Mortality in Epilepsy) conference, was a unique event that brought together neurologists, basic scientists and families of people with epilepsy. NYU FACES was one of the sponsors of the meeting and it was heartening to see NYU clinicians talk about cutting-edge research in this field. The fact that a seizure can cause death suddenly and without warning is something that was observed over a century ago. This phenomenon is called SUDEP or Sudden Unexpected Death in Epilepsy. Although the causes underlying SUDEP are not fully known, some risk factors are refractory epilepsy (i.e. when seizures do not respond to medications), male gender and uncontrolled seizures.

The session started off with an overview of mortality in epilepsy, and a term called SMR (Standardized Mortality Ratio) was introduced. For epilepsy, SMR would mean the number of deaths in people with epilepsy as compared to the general population. The SMR for people with epilepsy is higher than of the general population and there are a number of reasons why this could be the case. Some of them are the seizures themselves, the type of seizures and the level of seizure control that drugs offer. In fact, if we study another parameter – the YPLL – ‘years of potential life lost’ - people with epilepsy have a higher YPLL. YPLL is another way of measuring how epilepsy impacts one’s life – it is the average number of years a person would have lived had she or he not suffered from epilepsy.

It is important to take into consideration that people with epilepsy have a higher incidence of accidents as compared to the general population. Whether or not accidents are related to the seizure itself is a subject of active research. One reason the topic of studying mortality in people with epilepsy is complicated is because epilepsy can be related to comorbidities (conditions that may co-occur with epilepsy), one of which is depression. Depression itself may lead to suicide- another cause of mortality in epilepsy.

The basic science being done in this field is fascinating as we can understand what biological mechanisms in the brain make people with epilepsy more susceptible to mortality. There are three biological systems that scientists are focusing on – the brain, heart and the lungs. The brainstem – a part of the brain that controls respiration is the subject of active research. It could be that seizures affect neurons (nerve cells) in the brainstem, and they no longer allow the brainstem to control respiration. A seizure could cause sedation and suffocation by a surface such as a pillow because of disruption in arousal (alertness and wakefulness) mechanisms. A neurotransmitter known as serotonin (also called 5-HT) is also well studied because of its role in arousal. Another topic of interest is ion channels –pores in the neuronal membrane that allow for entry and exit of ions like sodium and potassium. Since ion channels control neuronal excitability, it is possible that mutations or deficiencies in ion channels can lead to seizures and mortality. Another interesting target is a molecule known as adenosine. Seizures can increase levels of adenosine which can depress respiration leading to apnea (termination of breathing). If scientists can find a way to target the adenosine system, it could give us therapies and ways to stop SUDEP.

Cardiac mechanisms are also important to understand mortality in epilepsy. For this, we need to consider the autonomic (the involuntary or visceral) nervous system. The autonomic nervous system is responsible for controlling respiration, heart rate, and digestion. All these functions occur below the level of consciousness, hence the term ‘involuntary. Seizures can affect the autonomic nervous system, which may explain why some people can experience auras like nausea and vomiting right before they get one. Needless to say, autonomic mechanisms underlying SUDEP are being actively investigated. Another thing to consider is the effect of anti-epileptic drugs on cardiac function. This is because scientists have shown that in animal models, anti-epileptic drugs can cause AV block and heart failure. The NYU Comprehensive Epilepsy Center’s Dr. Daniel Friedman talked about devices that can be used to predict a seizure. Such a device has obvious benefits because members of the family or loved ones can be notified of a seizure. This field has a lot of exciting ongoing research, because most of these novel devices are quite affordable. However, it is important to recognize that none of these devices are FDA approved, and that these devices will not be helpful in every person and in every seizure. Still, they offer hope to individuals with epilepsy and their caregivers. These devices have sensors that monitor movement, heart-rate and respiration. The most exciting device that is being developed is one that has a feedback loop that can detect and stop seizures on its own, in case a caregiver is not nearby.

All in all, progress is being made in this field in leaps and bounds, and it is only a matter of time that unexpected mortality in epilepsy is an issue of the past.

Sloka S. Iyengar, PhD is an epilepsy researcher, and is interested in the basic mechanisms that can cause groups of neurons to generate and sustain seizures. After a Bachelor’s degree in pharmacy in Ahmedabad, India, Sloka attended University of South Carolina School of Medicine for her graduate work, where under the mentorship of Dr. David Mott, she used electrophysiology to study epileptic circuits in experimental rats. She is now at the Nathan Kline Institute, New York, where she is examining how postnatal neurogenesis in the hippocampus can affect seizures and epilepsy in the lab of Dr. Helen Scharfman. In addition to epilepsy research, she also has a strong interest in epilepsy advocacy and education.

6) CAMPING WITH SPECIAL NEEDS AND A KETOGENIC DIET

By: Melanie Brazil

'Macadamias, pecans, walnuts'; unlike his twin brother Gabriel who asks for cookies, chips and candy, Elijah asks for nuts when he wants a snack. Elijah cannot have sugary snacks as he is on the high fat, low carb ketogenic diet to help control his seizures. His special diet does not prevent him from participating in varied activities, and this summer, Elijah went to camp, along with a cold box full of his keto food.
A recipient of the Dr. Blanca Vazquez Summer Camp Scholarship Program, Elijah attended AHRC's Camp Anne for 10 days. This has been his third summer at the Upstate New York camp and he had some amazing experiences. His favorite activities were splashing in the zero-entry pool and visiting the lake. He also loved the horses and chickens. Elijah has been lucky to have the same counselor for the last three summers, and as a young camper gets lots of attention from everyone.

Melanie and her son Elijah

Melanie and her son Elijah

Elijah was diagnosed with Lennox Gastaut Syndrome before his second birthday. He was experiencing multiple generalized seizures and went through many different medications. Without lasting seizure control the dosage levels of his drugs escalated and so did the side effects. For about a year, Elijah was bloated, drowsy and unable to focus for much of the time. Then Elijah's neurologist suggested trying the ketogenic diet - a prescribed medical diet that is very high in fat and low in carbohydrates. It is known that starvation can control seizures, and this diet mimics starvation by putting the body into a state of ketosis which forces the body to burn fat for energy instead of carbohydrates. The neurologist decides the ketogenic ratio which defines how much fat compared to the sum of protein and carbohydrates is in every meal. Each meal is also calorie controlled, so the different parts of Elijah's meals must be carefully weighed out to the prescribed calories.

Elijah horseback riding at Camp Anne

Elijah horseback riding at Camp Anne

After initial skepticism was put to rest by the weight of the scientific evidence, and perhaps harder, after coming to terms with the commitment needed to manage the diet, we decided to give it a go. Initially, nothing changed, but after a few weeks of tweaking, Elijah's seizures just melted away. We enjoyed a few blissful months seizure free and Elijah's teachers and therapists were amazed at his improved development. Eventually, some seizure activity returned, but nothing like before the diet.

Even with some seizure control, Elijah still has global developmental delays and at 7 years old, his speech is just emerging. He needs constant attention as he has no concept of danger. It was hard to imagine that he would ever be able to go to a sleep-away summer camp. But three years ago at the RCSN Summer Camp Special Needs Fair, I stopped at the AHRC desk to inquire about day respite care for then 4-year old Elijah and they asked if I had thought about sleep-away camp. In fact the day respite they offered was for older children with a student to counselor ratio of about 3:1 but AHRC's residential Camp Anne takes kids as young as 5 and can provide a 1:1 student to counselor ratio.

Sleep-away was not something that I had really considered for my special needs son and my initial reaction was that it was crazy! At that same fair I spoke to another parent who's special needs son had been going to camp for many years now. She said that her son spends half the year looking forward to camp and the other half reminiscing about all things-camp. Her only regret was that she did not know about Camp Anne sooner and that her son only started attending as a teenager. So the seed was planted.

After some reflection, I talked to staff at Camp Anne about Elijah's suitability and after the discussion and interview, they said they thought he was! The next hurdle was trusting the staff at Camp Anne to prepare Elijah's keto meals. Every component of a keto meal must be weighed so that each meal has the prescribed amount of fat, protein and carbohydrate, and every meal must be eaten in full. The easy answer was at first I didn't really trust them! For Elijah's first camp experience I sent down all his food with everything pre-weighed and assembled. But I soon relaxed as Michael Rose and his staff at Camp Anne are experts at looking after special needs children. They even have a chef who focuses on special diets. Since then, I have become more laid back and given instructions for the chef to provide and weigh some parts of the meals. Elijah was even allowed extra calories for special occasions at Camp, such as celebrating his birthday with a special keto-cake, and the last-night banquet.

While Elijah was at camp, the rest of the family took the opportunity to take a regular beach vacation, and importantly Elijah's brother Gabriel, got a chance to get all the attention for a change and do fun activities too.

Living life day to day with a precious special kid has its joyful moments, but it is also all-encompassing, so respite is hugely important. The wonderful thing about sleep-away camp is that it allows for family respite while giving a great experience to your kid. Even if your child is young, think about giving them this fantastic experience and give yourself a break at the same time. For now I can say that the last 3 years at AHRC's Camp Anne have been an amazing experience and I would recommend it to any family in this situation. Please click here for more information about Camp Anne.

CLICK HERE TO READ “FAT CHANCE”

Elijah is featured in this article about children with epilepsy whose condition is resistant to medication, and a high-fat, low-carbohydrate diet may help bring their seizures under control.


JOSEPH PADULA

By: Diane and Rick Padula

Until his first grand mal seizure at the age of three, our son, 22-year-old Joseph Padula, was developing quite normally. Since that time, his seizures have been uncontrolled, despite his trying many drugs and drug combinations. Because of Joseph’s multiple disabilities and random--sometimes severe--seizures, we find it difficult to entrust his care to anyone.

Joseph at Camp Nova

Joseph at Camp Nova

Fortunately, for the past 10 years, Joseph has benefited from the Dr. Blanca Vazquez Summer Camp Scholarship Program, whose generosity has been a godsend, not only for him, but for our entire family. These scholarships have entitled our son to a fully funded week at Camp Nova, run by The Epilepsy Foundation of New Jersey for young people with seizure disorders.

The staff at the camp, including round-the-clock nurses, gives us the confidence that Joe is in a safe, secure and fun environment. During his time away, he enjoys arts and crafts, boating, relaxing and all of the socializing that is an important part of any camp experience—including the dance. We, in turn, can relax with our two daughters, Elizabeth and Rachel, and participate in activities that Joe would not be able to tolerate.
Joseph at Camp Nova

Often, donors do not get to see the results or feel the impact of their charitable contributions. Our son Joseph’s week at camp is something that our entire family looks forward to every year. Thank you, to all who make that possible. WE WANTED TO LET FACES PHILANTROPISTS KNOW THAT THEIR EFFORTS AND DOLLARS HAVE A DIRECT AND POSITIVE EFFECT ON PEOPLE’S LIVES.

7) FUNDRAISING CORNER

SAMSON’S BAR MITZVAH
PLEASE CLICK HERE TO VISIT DONATION PAGE
By: Samson Weiner


 

Samson and Jonah

Samson and Jonah

Four years ago, my world was turned upside down. My parents had just informed me that my brother, Jonah, had an extremely large brain tumor that required a very invasive and dangerous operation to remove. He was only 6 years old at the time and had just begun first grade the day before. Fortunately, we had amazing doctors at NYU Langone Medical Center who had access to the most advanced research on brain tumors. With their help, my brother beat the odds and the surgery was a success! However, the recovery was long and difficult. He missed 6 months of school and it was longer before he could return to playing sports, which he loves. While we were lucky, our family realized that many others would not be so fortunate. To help in the fight to give every family a chance at a happy ending, we started the Allyson and Andrew Wiener Brain Tumor Research Fund in conjunction with FACES (Finding a Cure for Epilepsy and Seizures) and NYU Langone Medical Center. The money we have raised has helped to fund research for drugs that shrink tumors as well as helping to support a pediatric neurosurgical fellow.

I could never imagine that three years later we would be one of those families praying again for a miracle. During a routine follow-up MRI, the doctors found another brain tumor in Jonah's head. We were devastated. However, in the three years since Jonah's first surgery a new and significantly less invasive procedure had been developed that could remove his tumor endoscopically (basically arthroscopic surgery of the brain). He was the 18th person at NYU hospital to have this surgery and the doctors said it went so well that they might have to write it up in the medical books! Amazingly, Jonah was back at school and playing sports after only 6 weeks this time (NOT 6 MONTHS!). However, the recovery was still hard and, sitting with him in the hospital, I saw how many families there remained who were not as lucky as us. My goal is to help the doctors find ways to treat people with all kinds of brain tumors and to make treatment so easy that it is as simple as removing a splinter. Everyone should have a chance at a happy ending and no-one should have to go through what my brother had to go through.

This is why I decided for my Mitzvah project (good deed), as part of my Bar Mitzvah, to raise money for our family's Brain Tumor Research Fund. I successfully ran the 4 mile Israeli Day Race on June 1st and setup an online fundraising page to raise money to support this terrific cause. Unbelievably, Jonah ran the race with me only three months after his last brain surgery! It has been an incredible experience to train with him and to work with him on his recovery. His strength and bravery amaze me. I feel lucky to be able to help him get back to 100% so that he can fully enjoy being a child again.

ISHNA’S ORIGINAL COOKBOOK

PLEASE CLICK HERE TO VISIT DONATION PAGE

Ishna

Ishna

The very first seizure I had was a memorable one - it occurred out of the blue, on a 747 airplane coming back from a family vacation to India. At 11 years old, I had no idea what epilepsy was or if it would limit me in life - today I am aware of how fortunate I am to be able say that my epilepsy has NOT limited me. In fact, it has motivated me to help other people who have the same diagnosis. To help improve the quality of life of others affected by epilepsy and of those who love them, I turned to family and community members to put together a very special cookbook of about 25 very special recipes. I know that in my own family, two things we cherish are each other and the food we share together. Healthy eating is important for all of us, but even more so for those whose conditions may be affected by their diets. With this goal in mind, I partnered with Courtney Glick, MS, RD, CDN at NYU FACES, who was generous enough to share many of her own wonderful recipes, to be included in the cookbook. Although the recipes I have selected are not all ketogenic in nature, they are nutritious (and delicious!). 100% of proceeds from the sale of my cookbook will go to FACES not only because my wonderful neurologist, Dr. Judith Bluvstein, is at NYU Langone Medical Center, but also because the contributions will fund research, new therapies, and support not only those affected by epilepsy, but also those who care for them. Most of the recipes in my cookbook are family recipes my mom and I often make together in our kitchen. I hope you try them out- prepare and enjoy them with your loved ones!

8) MEET JORDAN COLLINS: A FACES COLLEGE SCHOLARSHIP RECIPIENT

Jordan Collins

Jordan Collins

At the tender age of 12, my life shifted in a matter of weeks. After having my first seizure, I missed a week of school to recover. While being on hiatus, a friend of mine found out I was ill and called to check on me. I appreciated her kind words of encouragement and support. When I returned back to school, I quickly realized she was not my friend, because our whole entire junior high school found out that I had a seizure.

After numerous hours of thinking to myself, I came to the conclusion that having a seizure was a fluke. Unfortunately, it was not. Two weeks later I collapsed down on the bathroom floor while I was washing my hands. After my second episode, I was due for a doctor’s visit. Dr. Le Pichon, my neurologist diagnosed me with juvenile myoclonic epilepsy. Shortly after I was given the diagnosis, he went over the important details of my case. I was told not to stay up late, drink lots of water, get plenty of sleep, no drinking alcohol, and most importantly, I needed to take my medicine consistently at bedtime every night. I wanted to rebel out of spite, but deep down I knew I couldn’t because of the consequences to follow.

My peers did not want to socialize with me. Rumors about me began to spread like a country wild fire. A boy, who used to have a crush on me, approached me after I returned back to school only to bully me in front of others. One time, coincidentally, a light was flickering above me; he then began to yell “is that light going to make you have a seizure?” I was very embarrassed and timidly replied “no”. I couldn’t believe how quickly my peers turned their backs on me. I began to trust nobody, except for my family.

Throughout my remaining years of junior high school, I hid myself from everything so I could avoid being bullied. I stopped engaging in conversations to avoid being the laughing stock.

Eventually, I began to find my outlet which was my interest in fashion. Fashion became my friend when others were not. The same peers, who teased me for my epilepsy, bullied me for my unique fashion sense. In high school, I started to blossom. I started participating in activities that brought joy to my life. I decided I was not going to let others dictate my happiness. I began to join numerous clubs while I attended Lawrence Free State High School. I became a member of key club, yoga club, cake decorating club, LINK crew, and “can we talk”. I am most proud of my position as captain of the cheerleading squad and being the women’s basketball team manager. I value leadership roles. I am most comfortable when I am in a position to lead, and not to follow. My view point on Dr. Le Pichon’s medical requirements have changed dramatically over the last seven years. While I was in high school, the social stigma of getting “plastured” with alcohol was fun to others. I accepted that I could not experience this. I knew that if I ever gave into peer pressure, I would suffer a seizure the next morning. I am determined to not harm myself for someone else’s joy. I can confidentially say “no, thank you” to social situations involving alcohol. I truly see not being able to drink a blessing because it will let me take care of myself and I will get the rest I need. This will help me be an excellent college student.

The FACES College Scholarship award I have received is worthy to me because I will not waste my time nor education. This scholarship is benefiting me because my parents cannot afford to send me out of state for college. Having epilepsy has taught me that despite what others think of you, you must continue to strive towards your goals. Attending FIDM Orange County is my dream that came true. I am majoring in Merchandise Marketing. I will not let my personal battles defeat me. I will rise above!

9) FACES NOTEWORTHY PRESS

Top 10 National Press Articles

  1. PARENTS, STATE SEN. FIGHT FOR LEGALIZATION OF POT TO TREAT EPILEPSY
  2. GETTING BACK TO SCHOOL SLEEP SCHEDULES
  3. CALLOUS TEENAGE THUGS THROW BRICK AT EPILEPSY SUFFERER - TO MAKE HIM HAVE FIT
  4. STUDY SHEDS NEW LIGHT ON BEST APPROACH FOR JUVENILE MYOCLONIC EPILEPSY
  5. 14-YEAR-OLD'S LIFE 'SPENT ON A LEASH'
  6. NEW SURGERY CAN RELIEVE EPILEPTIC SEIZURES
  7. SAFE DRIVING PERIOD CALCULATED FOLLOWING FIRST-TIME SEIZURE
  8. LASER SURGERY SHOWS PROMISE IN HALTING SEIZURES IN EPILEPSY SUFFERERS
  9. MEDICAL MARIJUANA THE KEY TO LITTLE KATELYN LAMBERT’S SURVIVAL: SHE SUFFERS UP TO 1400 SEIZURES A DAY
  10. EPILEPSY: CAUSES, SYMPTOMS, AND TREATMENTS

10) MAKING A NEW FRIEND

Leo, Colin, and Samantha together

Leo, Colin, and Samantha together

“It was really awesome meeting Colin from Colorado! He's such a nice and smart kid. I really hope that his epilepsy will be a struggle of the past!” - Samantha (age 15)

“It was fun to hang out with Colin! He reminds me of when I was little. His side effects seem similar to the ones I used to have. I know that he'll get better because he now has the best care from Dr. Devinsky, just like I did!” – Leo (age 13)

 

The FACES PET RELATIONSHIP PROJECT is made possible by a generous grant from Amie's Place Foundation.

NEXT LECTURE: WEDNESDAY OCTOBER 15TH, DEEP BREATHING AND EPILEPSY
PLEASE CLICK HERE TO VISIT THE PEACE OF MIND LECTURE PAGE

Thursday, September 18th, 6:30pm-10:30pm at Espace, NYC

PURCHASE YOUR TICKETS TODAY!

REGISTRATION CLOSES ON 9/16/14