September 2015

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SEPTEMBER 2015 FACES E-NEWSLETTER

  1. MEET MARISA MALTESE
  2. RECIPE OF THE MONTH
  3. FACES CLUBS AROUND TOWN
  4. KETO KIDS CLUB EVENT
  5. VNS FOR EPILEPSY
  6. WHAT GAME DAY MEANS TO ME
  7. I’VE FALLEN AND I CAN GET UP
  8. NOTEWORTHY PRESS

1) WELCOME MARISA MALTESE; FACES MANAGER OF SPECIAL EVENTS

Marisa MalteseMarisa has an extensive background in fundraising and event management. She comes to us from Autism Speaks where she was the Manager of National Events. In this role, Marisa was primarily responsible for planning the organization’s signature event, Autism Speaks to Wall Street – Celebrity Chef Gala. She recruited celebrity chefs, managed all logistics pre-event and on-site, and worked directly with hosts and celebrity guests. The Celebrity Chef Gala raised just under $2 million annually and is a highlight of the New York social calendar. Additionally, Marisa executed the Autism Speaks Annual Celebrity Golf Challenge at Winged Foot Golf Club. Autism Speaks hosted over 200 golfers and 300 dinner guests for a program featuring live and silent auctions. Marisa cultivated committee members, identified and secured sponsors, managed volunteers and solicited auction items. This event raised $1 million annually for the organization and is rated one of the top non-profit golf events nationally. After five years at Autism Speaks, Marisa has been working independently with organizations to supplement their fundraising and event planning efforts. These organizations include: The Greenwich Food and Wine Festival, Warriors in Motion Master Chef Celebration benefiting the Adaptive Sports Foundation and the Wounded Warriors Program, The Westchester Food Bank and Group for the East End.

2) RECIPE OF THE MONTH

By: Pegah Jalali MS, RD, CNSC, CDN

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

BERRY BUTTER BITES

It is time to start thinking about going back to school. Some readers may groan or some may smile about this time of year. Either way, it is always easier getting back into a routine when you are prepared. I wanted to share this easy, tasty, pretty and keto friendly snack that my friend Amy Fischer (@thegreenfisch) created. You can make this ahead of time, pack in a lunchbox or serve as an afterschool snack.

Ingredients:
12 raspberries
1 tablespoon of coconut oil
1 ½ tablespoons of almond butter
Optional: vanilla extract, cinnamon or protein powder

Instructions:

  1. Mix coconut oil and almond butter into smooth mixture, add any optional ingredients
  2. Wash and dry the raspberries (be careful they can be very delicate!)
  3. Stuff the raspberries with the mixture from step 1

Nutrition Facts:
270 calories, 26g fat, 6 g protein, 4 g carbohydrate. If you are on a specialized diet for epilepsy, ask your dietitian to make modifications to fit your plan.

3) FACES CLUBS AROUND TOWN

By: Rachel Polkowitz

This past year I decided to start a club in my school to raise money and awareness for epilepsy. I was motivated to start this club because my sister Carly was diagnosed with epilepsy in 2012. Carly was diagnosed when she was a freshman in high school, which can be a challenging time for any teenager. The mountain of epilepsy was a tough one for my sister to climb. Watching her struggle emotionally, socially, and academically was heartbreaking for my parents and me. My sister, who was once so confident and comfortable in her own skin, became afraid to leave the house because she was afraid of having a seizure. With the support of our family, my sister has battled back. In fact, she battles every single day and works twice as hard for her achievements. Carly is remarkable, keeping a smile on her face even during the times when the mountain seemed too steep to climb. She has an infectious smile, one that can light up a room. She feels like she has so much to learn, yet she has no idea how much her positive attitude teaches others.

I started FACES at MHS (Marlboro High School) to show people that epilepsy does not define a person. My sister was hesitant at first, but is now my right hand in helping plan all of our events. This year we sold FACES pens in purple and black. Everyone can use an extra pen, especially for a good cause. We sold 900 pens! We bagged groceries at Shoprite and had a great night out at Mini Golf. We raised over $3,000 in our first year! I was overjoyed at how many kids in school wanted to get involved in learning more about epilepsy and making an effort to raise money. I am looking forward to next year and hope to raise even more money!

My sister, who now stutters and never likes to public speak, told her story at one of our FACES at MHS meetings. The fact that FACES at MHS helped her feel more comfortable in her own skin made me feel incredible. She is my role model and I aspire to be more like her every day. Every day is a new journey that I get to go on with such an amazing person who I am lucky to call my best friend. Although there may be some days where it seems that the mountain becomes even steeper, Carly always finds a way to beat the odds and keep climbing. I know that with the support of FACES, my sister and people just like her will get to the top of their mountain.

From left to right: Rachel and Carly
Polkowitz, and Dr. Orrin Devinsky

Marlboro High School FACES

 

2ND STORY-FACES CLUBS AROUND TOWN

By: AJ Davis

I love my sister. It would be messed up if I didn’t, tragic in fact, but although we have our sibling squabbles, she has inspired me. In the course of her life, she has faced so many setbacks, such as epilepsy from birth. Despite these seemingly insurmountable obstacles, she continues to demonstrate great resilience and success.

AJ Davis, Donna Emma,
Emma Davis and Larry Davis

Thankfully, she recovered from the epilepsy that plagued her childhood, but my family and I will never forget the one organization who made her recovery possible. By the age of fifteen, I had frequently heard the name FACES described as, “the place that helped Emma.” I did not know much and was eager to learn more, so my parents took me to my first FACES Gala. The speaker that year - Brian Williams - was great, but the presence of Dr. Orrin Devinsky stood out to me. When he stepped up on stage he set a new tone for the atmosphere of the room. As he spoke, I turned to see my sister’s face light up like a Christmas tree on the morning of the 25th. I had never seen such an expression of gratitude displayed on Emma’s face before that night.

Over the next year, I learned more about my family’s involvement on the board and how my sister had written for the newsletter. Everyone was pitching in except me. I was 15 going on 16 and had plenty of time on my hands. Even though I was just the sibling, I felt gratitude to the organization. I thought that there was little I could do.

After a year, the next gala came around, and I set a goal for myself. The task wasn’t specifically assigned to me, but was more of a call to action to the general FACES community. It was suggested that high school students start school clubs to spread awareness of epilepsy and seizures, with the added benefit of raising money.

The day after the gala I met with the community service director at my school whose job it is to approve clubs. I asked him if it was possible to get the FACES School Club started. At that point, my school already had every club under the sun, all asking for student donations. I was given the green light to move forward after explaining my close ties to the organization and that I had friends willing to support me. I also found out that one of my friends at school not only had a family heavily involved in FACES because his sister also suffers from epilepsy, but he was going to try to start the same club as me.

Together, we went through the halls trying to get kids to join our club. I was shocked to learn that maybe five out of the forty or so kids knew what epilepsy was. From that day on, we knew we couldn’t do FACES justice by giving back some money from a bake sale or dress down day. We had to address the school as a whole so they could understand what so many people around us live with on a daily basis.

With much debate over the timing, we spoke to the whole school - over 500 kids and 100 faculty members. The response was overwhelming and on our dress down day we ran out of bands to sell, which means that close to every student donated. While that was fantastic, I took more pride in the thanks we got from some of the faculty. A few teachers even came up after our speech to thank us because a family member of theirs had dealt with epilepsy. This took me back to the hard times, the time when I saw my sister struggling so much and I felt a sense of joy. Not only did my sister overcome epilepsy, but also, close to 500 people were now understanding and willing to support her. With the FACES School Club program, I was able to expand the scope of the FACES community, my family’s community and most importantly my sister’s community. With every new club formed, a new group of children are educated on the frightening reality that people like my sister faced.

4) KETO KIDS CLUB EVENT

5) VNS FOR EPILEPSY

By: Sloka Iyengar

VNS stands for Vagus Nerve Stimulation. Sometimes, it is referred to as ‘pacemaker for the brain’. This is because it prevents seizures by sending mild pulses of electrical activity to the brain through the vagus nerve. Since seizures are caused by aberrant neuronal firing, VNS disrupts electrical activity in the brain and hence aborts seizures. Some scientists also have shown that VNS causes release of neurotransmitters that dampen down excitability. In addition to epilepsy, VNS is used to treat clinical depression as well. Two-thirds of patients with epilepsy respond well to medication; however the remaining one-thirds does not. Alternative treatment strategies for these individuals are dietary (e.g. the ketogenic diet), surgery, VNS and RNS (responsive neural stimulation). It is important to keep in mind that VNS is a treatment and does not provide a cure for epilepsy.

The VNS device is implanted under the skin in the chest region, and has a wire that runs from the machine to the vagus nerve in the neck. The procedure is done under general anesthesia and patients can go home the same day. Once it is implanted, the stimulator needs to be programmed to generate small pulses of electricity as per the patient’s tolerance and specifics of the seizure. The settings on the device are adjustable, and typically the electrical current is dialed up over a course of time as the patient’s tolerance increases. Patients are also given a wand or a hand-held magnet that delivers an immediate pulse of electricity as and when needed. This is particularly useful for patients that have an aura before their seizures, as it gives them some time to activate the stimulator. The battery life of the VNS is 5-10 years, after which it can be replaced.

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

6) WHAT GAME DAY MEANS TO ME

By: Steven Tarr

A mirror is a reflection not only of what the world sees, but also of what we see in ourselves. When I look in a mirror, I see scars. Not of the flesh, but of the soul, from hardships gone by. I see my past, a time of pain and turmoil, but also a time of hope and perseverance.

One look in the mirror transports me back to FACES Game Day, 2007. Walking around Chelsea Piers, my senses ignite, synapses firing like lights on a pinball machine. The inviting scent of chargrilled hamburgers. The shockwaves of adrenaline pulsing through my veins as I live out childhood dreams of hitting home runs in batting cages and scaling rock walls, dreams thought unattainable after hearing my restrictions from doctors. The pure excitement of seeing other children with epilepsy and realizing that I am not alone, that we can still be normal, even if just for a day. Back at home, I look in the mirror. I see seven nightmarish seizures over the past three years. I see countless hospitalizations. I see my desire to be free from guards in white coats. But for the first time, I see a chance to conquer the disease.

The year is now 2010. My 8th grade homeroom teacher informs the class that we must undertake a humanitarian project. When she asks for suggestions, I immediately think of FACES, of the countless epileptic children whose lives they've improved, of the times they made my hospitalizations bearable. The articles I've written for their newsletter aren't enough. After collecting countless toys, I depart for NYU's pediatric epilepsy wing. I meet many children – reflections of my former self. Now, I can show them that they won't be hospitalized forever, that they can accomplish anything they set their minds to. Looking in the mirror again, I see the scars of seizures and open wounds of ocular migraines. I see the migraine's blinding effects, crippling my abilities and causing everyday life to become a struggle. But now, I see the importance of paying it forward and the impact I can make.

Another year flashes by. The doctors have reverted to their restrictive ways. My dreams of joining the marching band must wait. As dejected as I am, I cannot give in. The school year arrives, and I begin working feverishly. Proving that I am stronger than my illness is all that matters. By year's end, I have made it through a slew of honors classes, taught at Hebrew school, and shown that marching band is where I belong. Back at the mirror, I see a seven-month migraine. I see the agony of waking up and going to bed in continual, excruciating torment, only to find solace in unconscious slumber. I see never-ending treatments, from acupuncture and acupressure to Botox and herbal supplements. But as a result, I see battle-hardened focus, determination, and perseverance.

I arrive at FACES Game Day, 2013, but now, everything feels new. It's surreal to be working at the place that brought me so much happiness, hoping to do the same for another generation of children. Every child passes by with the same look of awe and exhilaration I felt six years ago. I feel honored to be helping FACES inspire hope in these children. A woman unexpectedly approaches me and introduces herself, "Hi. You may not remember, but three years ago, you brought my son toys when he was hospitalized. He still talks about you. You changed our lives."

When I look in the mirror now, although I see scars of the past, I don't see open wounds. Instead, I see lessons learned and lessons taught. I see the impact made on that boy, from the first time in the hospital to our most recent get-together only months ago, when I gave him a tour of Liberty Science Center. When I look in the mirror, I see hope.

7) I’VE FALLEN AND I CAN GET UP

By: Marie Pepe

One beautiful spring day, both the sun and I were smiling as I ran my daily errands.

Wait; uh-oh; oh-no; BANG! Suddenly, my head was in a dither. I do not remember what happened; where or who I was? All was a blur and my entire being felt like it had been jolted by a lightning rod. It was amazing how within a minute, an aura, a seizure just came and transformed my body. Once any “episode” is over it takes my mental and physical being so many weeks to again experience a sunny day without an ice pack or a headache. My body has black and blues probably from the falls that I do not remember. Sometimes doctors are called and sometimes not. I have to call in sick at work and remain at a standstill at home. No matter how hard I try to regain a smile, somehow depression manages to rear its ugly head until the day where I have enough energy to simply get out of bed and try again.

Truth be told, that was how it was every epileptic seizure (“postictal”). After several hospitalizations and more EEG’s than I care to remember, my doctor and his team had made the determination that I needed to try a different combination of anti-epileptic drugs in order to better control and limit my seizures. It seems that over the past few years my seizures had been coming more often than not, hence my quality of life had continuously diminished. This last time while in the hospital, the plan was to slowly wean me off of one of my medications while introducing my brain to another new FDA approved drug. My pill count was well over a dozen daily but my neurologist believed that this new drug would make a difference. This was not an easy task for my family and I to consent to as we knew that there would be setbacks and there were. While in the hospital, my seizure activity increased over my 10-day stay on a video EEG until the right combination of four different prescriptions was regulated. Bi-monthly, my blood levels continue to be monitored while my medications are still being adjusted until the correct combination is met.

Epilepsy is not new to me as I was diagnosed with a “seizure disorder” as a young child. I have taken many pills over the years. In grade school, I remember asking my parents why I had to switch to the big orange pill as the little white ones were easier to swallow. It was explained to me that the doctors thought that the new pill would help me to concentrate more and fall down less. At eight-years-old, that answer satisfied me. As I grew older, I started to ask more questions and realized this condition was here to stay and trying to control it was my best option. What helped me most after a seizure was complete bed-rest, eating properly and drinking plenty of fluids. Of course seeing my neuro regularly as well as taking my medication timely was a significant factor in trying to feel my best. Now an adult, these are still the steps that I follow.

Many years ago I heard about FACES by reading a medical pamphlet. Thereafter, FACES became my face as I had discovered a group who understood my struggles and people who knew a lot about my daily challenges. This group helped me to realize how many others had this condition and how common it really was. I began to attend FACES’ conferences and lectures with my family. We were no longer afraid of epilepsy and we learned how to tackle epilepsy both physically and mentally. Thereafter, I also learned that my medical teams were key players connected to FACES. This also gave me more courage as well as confirmed my faith in my doctors.

Unfortunately, a few years ago, I had to give up my profession as I was no longer able to work due to my frequent seizure activity. However, today, I now feel like I have a chance to face each day. I realize the positive in my life and I am thankful for this. Oh there are times when epilepsy takes center stage in my life but my latest change of medications has given me hope. Yes, I still get headaches and there are days when I am so tired from the combined pills but thankfully “postictal” no longer feels like a locomotive has hit me. I think a great deal of my strength stems from my family and friends as they remain my biggest cheer leaders. Today, I am still changing medications conservatively, as supervised by my doctor, but I as a result of the most recent change of medications, I am starting to re-gain a better quality of life. Perhaps weaning off of one of my anti-seizure meds has helped lessen that terrible onset of depression. I can feel my head beginning to unscramble now and my thoughts are starting to shuffle themselves in order.

Each day, I still continue to rely on FACES as a learning source, a comfort zone and a place where I have made new friends. In addition, I belong to other epilepsy support groups and I engage in chat rooms. I find that connecting with these groups and with others educate me; encourages me as well as it lets me express my own fears and anxieties. I speak to people who are angered at epilepsy for it now defines who they are. Others refer to themselves as “warriors” as they continuously fight to feel better. Yet too many people have lost their incentive to accomplish the smallest task as they are overwhelmed with the question, “Will I have a seizure today and if so, how many?”

My advice to others is to realize that you are not alone and that there is no reason to be lonely as you seek answers. Continue to proceed by searching for the best medical advice as a start. There are many medical options once you find a caring doctor. Importantly, reach out to others such as FACES who you can relate to and who will help you understand more about what it is that you are going through. You may have Epilepsy but it does not have you!

I believe that this fight is worth the battle for although you may fall and even get knocked out at times, as me, you can get up.

8) NOTEWORTHY NEWS

Top 10 National Press Articles

CANNABIDIOL NEWS:

1) Cannabis for kids video
2) Science Seeks to Unlock Marijuana’s Secrets
3) Will Marijuana for Sick Kids Get Government to Rethink Weed?
4) In Canada, Parents Vow To Give Their Sick Children Medical Marijuana — Even If Doctors Won’t
5) PotBotics: Better Cannabis Recommendations Through Science
6) Study Confirms Safety of Cannabis Drug CBD

GENERAL NEWS:

7) Girls with Mild Autism Prone to Severe Epilepsy
8) Epilepsy Increases Mortality Risk in Pregnant Women
9) Inmate Son Suffered Seizure Before Death, Mom Says
10) Seizures, Electrocution, Death: Has Tough Mudder gone too far?