November / December 2012
NOVEMBER/DECEMBER 2012 FACES E-Newsletter
- A Message From Our Staff
- Leaving Langone: One Story
- New FACES Executive Director Brings Passion to the Position
- Piece of Mind Lecture Series by James Rivello, MD- When Seizures are Difficult to Control
- Nutrition Corner: Butternut Squash and Swiss Chard Farro
- Epilepsy Foundation of Metropolitan New York- Into the Light Walk
- Samantha’s Story
- There’s a Poem in the Calm
A MESSAGE FROM OUR STAFF
Dear Friends of FACES,
Our thoughts are with all those affected by the destruction of Hurricane Sandy. We hope you, your family, friends and colleagues are safe. Here at NYU Medical Center, we are incredibly proud of how our community worked to safely evacuate some 300 patients. Both our clinical and research programs have been affected, but we are committed to rebuilding and growing. The Comprehensive Epilepsy Center is open, and our FACES staff has just had email and internet restored last week. Pamela, Luis, Shari, Heather and Peggy are all available via email and by phone to answer any questions that you may have, or to provide assistance
We wish you and your families a happy and healthy holiday season 2012!
The FACES Team
LEAVING LANGONE: ONE STORY
Originally published in the New Yorker, Dr. Orrin Devinsky and his patient are highlighted on October 30, 2012. Please click on the link below to read the full article.
New FACES Executive Director Brings Passion to the Position!
By: Robin Dunn Fixell
As soon as you meet 39-year-old Pamela Mohr, the new Executive Director of FACES, you feel her energy.Her desire to push past obstacles to effect change is evident and her caring nature is infectious. Married since 2009 to Daniel Weinstein, a high school English teacher, Pam believes that her deep commitment to the non-profit world has inspired others to volunteer or seek employment at charitable organizations. "I think people are inherently good at heart," says Pam. "They want to contribute…to make a difference and feel like they are giving back." Pamela started her career path during her senior year at the University of Delaware. Unfortunately, her father was diagnosed with Non-Hodgkins Lymphoma while she was interning at the American Cancer Society (ACS), working on comprehensive school health education programs. Rather than pursue her original plan to become a school social worker, she took a job at the American Cancer Society’s Nassau County office upon college graduation. Sadly, Pamela’s dad passed away in 1998, and, although this was an extraordinarily difficult time in her life, she was motivated to create an evening seminar catering to young professionals who had lost a parent. After moving to Manhattan, Pamela worked for UJA Federation of NY as a Development Associate, but eventually returned to the American Cancer Society’s Manhattan office as an Events Manager. Pamela left ACS three years later, and spent five years at Ernst & Young as the Metro New York Area Events Manager; in 2005, she returned to the American Cancer Society as Division Director of Distinguished Events, overseeing all gala and golf events in New York and New Jersey – raising close to $10M annually. "I would say that my biggest accomplishment was the year I spent as the Interim Vice President for the American Cancer Society’s Manhattan region," states Pam, who reorganized and restructured a 28-person team. Combining her management skills and ease in connecting with people, Pam says she looks forward to "building relationships with our board...and focusing on fundraising for the gala." She would like to have at least four evening lecture series annually, and develop a young professionals event. Another goal, adds Pam, is to take volunteers "to the next level" so that they utilize their individual skills and maximize their contribution to FACES. She plans to do that by formalizing the Steering Committee – creating sub-groups that truly target people’s strengths and interests. Addressing the issue of educating students and teachers about epilepsy, Pam answers: "That is a major priority of FACES, and an important focus for the Steering Committee. We do have an active group of volunteers that have expressed interest in working on this project, and I look forward to growing the program along with them." When deciding to take the position of Executive Director, Pamela was impressed by the incredible work and lifesaving research of the Comprehensive Epilepsy Center – which convinced her that this was the right choice. "Dr. Devinsky is such an inspiration and his approach with patients is truly unique. I am excited by the incredible potential FACES has to grow”.
While no one in her family has had epilepsy, Pam has discovered that the disease has touched many in her life. "Since I announced my new position, friends have come forward to say that their family members are patients at the Comprehensive Epilepsy Center. What I've learned is that people don't talk about epilepsy—like they didn't talk about cancer. We need to educate the community at large and raise awareness." Although Pam admits that working is her greatest passion, she still finds time for her husband, family and friends. She actively volunteers with multiple organizations, loves dining out and has traveled the world. "I'm not a marathon runner," she declares, but "I support all my friends who are." It's just what you'd expect to hear from Pam.
Peace of Mind Lecture Series, by James Riviello, MD
When Seizures are Difficult to Control
Our Peace of Mind lecture, hosted by Dr. James J. Riviello on Thursday evening, November 15th, 2012 was a success. With over 20 attendees, Dr. Riviello spoke about controlling seizures and focused on determining appropriate treatments.
Difficult to control seizures have a major medical, intellectual, psychological, and behavioral impact on the life of a child and their family. These factors all contribute to determining the Quality of Life in patients with epilepsy. It is important for parents and caregivers to be aware of the evaluation and treatment options for refractory seizures, and especially, when to pursue these options. These options include other anti-seizure medications, epilepsy surgery, the ketogenic diet, and neuromodulation (vagus nerve stimulation).
Quality of life determinants start with an assessment of the actual seizure control and also focus on medical and psychological issues. It has become increasing apparent that there are cognitive, intellectual, and behavioral effects from epilepsy and anti-seizure medications and that their management is as important as the actual seizures count. It is also important to be aware of the contribution of epileptiform activity to the child’s quality of life measures. This lecture will define refractory epilepsy and review the selection of the appropriate treatment for a given child and the methods used to assess the cognitive and behavioral effects of seizures.
FOR THOSE OF YOU WHO COULD NOT ATTEND, A PRESENTATION WILL SOON BE AVAILABLE ON OUR WEBSITE
NUTRITION CORNER: Butternut Squash and Swiss Chard Farro Dietician Courtney Schnabel, MS, RD, CDN
Here is a hearty, healthy holiday recipe sure to win over guests at a party or your family on a cold autumn night. The nutty, delicate flavor of the Farro and the bitterness of the Swiss chard compliment the sweet, buttery flavor of the squash. This recipe is literally packed with nutrition and flavor.
Farro, also called Emmer, is an ancient Italian grain said to be the oldest cultivated grain in the world. Farro is a wheat species made from the whole grain, meaning it has twice the fiber and protein than modern wheat products. Farro is very similar to risotto in flavor and consistency, but has more fiber and protein than regular Arborio rice. In addition, Farro contains carbohydrates called cyanogenic glucosides, which have been found to stimulate the immune system, lower cholesterol and help stabilize blood sugar levels. Farro is becoming easier to find as its popularity increases. Currently, you can find Farro in many health food stores or any well stocked Italian food store. If you are unable to find Farro, Arborio rice can be easily substituted into this recipe. In addition to the health benefits of the Farro, this recipe contains Swiss chard and butternut squash, which both pack tons of nutrition. Swiss chard is high in vitamins A, C and K with 1 cup containing more than 50% of your recommended vitamin A intake, more than 100% of your recommended vitamin K intake and 20% of your vitamin C intake for the day. Butternut squash is also high in vitamins A, C, E, B vitamins and magnesium. 1 cup of butternut squash contains more than 100% of your recommended vitamin A intake. Vitamins C, A, E and B vitamins are all powerful antioxidants said to help in disease prevention.
Makes 4 main dish servings, 6 side dish servings
Nutritional Analysis (per 1 main dish serving)
365 calories, 8.5g fat, 62g carbohydrate, 10g fiber, 11g protein
1 ½ cups Italian Farro
2 cups of peeled, cubed butternut squash (small cubes)
2-3 cups low sodium beef, chicken or vegetable broth (your choice)
½ sweet onion diced
2 cups fresh Swiss Chard
2 tablespoons olive oil
1 cup dry white wine
Optional: parmesan cheese
- Heat oil in a skillet and cook onion until translucent
- Meanwhile, in a pot add the farro and the broth and cook for 30-40 minutes or until liquid evaporates and farro is tender (you may add more broth if needed)
- Add Swiss chard and cubed butternut squash and cook until tender (about 20 minutes)
Add white wine to butternut squash/Swiss chard mixture, scraping up any bits left on bottom of the pan. Allow wine to reduce to about half.
Once farro is cooked, add it to the pan and mix well. Can be topped with fresh parmesan cheese.
Epilepsy Foun dation Walk “Into the Light”
NYU FACES joined the Epilepsy Foundation of Metropolitan New York (EFMNY) this past Saturday, November 10th, as a team and sponsor of their 1st Annual “Into the Light Walk” for Epilepsy Awareness. This historic event in Hudson River Park marked the first time that the New York metro area epilepsy community joined together to walk for epilepsy awareness. More than 350 participants gathered at the Park's Pier 45 for fellowship, live music, face painting and opening ceremonies before walking the almost 5k course. The event featured a performance by Anguished Minds and a presentation of the annual Keeper of the Flame Award to sponsor, Premier Technology Solutions. All proceeds will go to Into the Light: Epilepsy Awareness, Education and Empowerment Programs. These include the Foundation's Epilepsy 101 and Seizure First Aid trainings which staff provide free of charge to area schools, companies, school nurses, first responders and throughout the community by request. For more information about the Foundation's programs and services, visit www.efmny.org or call 212-677-8550.
Written by Samantha
[…I've decided to come out from under the desk and reveal my name. So here we go…] Hey guys! For those of you who don't know me from last year's newsletter, I'm Samantha, and guess what, I'll bet you I'm just like most of you. I've gone through tough times, and my father, my brother, and I all had epilepsy. My brother had epilepsy until about age nine, now he's eleven turning twelve in June of 2013. I had epilepsy until about age five, and now I'm thirteen, turning fourteen in April of 2013, and my father had epilepsy growing up, although I'm not sure what age he had it until. Now, back to me. Me, me, me. I'm an eighth grader and I live in Manhattan with my mom, my brother, and the sweetest dog. We rescued him from a kill shelter in the south through the ASPCA, at only two weeks old, but we were able to bring him home at 7-8 weeks old because he was sick. Now he's one year old!
Now, just because I don't have epilepsy anymore doesn't mean that I'm not different. I am different, and to me, that is a very special thing. It makes me unique, and it also makes you unique, even if you had or have Autism, ADHD, ADD, Down Syndrome, Asperger’s Syndrome, or anything else in the world for that matter. Epilepsy included! Everyone is special and unique. Everyone is here for a reason, so don't give up on yourself and let someone say "Oh she/he has or had this so they can't do this or read this or go here or go there or whatever." You are here to conquer your fears and difficulties. What do you think? (P.S. That matters too!)
People are always saying that it’s such a big deal to have, what they call them, "problems", but it’s not. We are normal people, just like them. It's just, nobody's giving us a chance, nobody cares about us if we're, what they call us, "weird". We need to change that. We need to prove them wrong. We need to be recognized!
Let me tell you a little story. A story in which occurred long before we had met Dr. Devinsky. Since I was only three, I'll tell you what I can remember. So, when my brother was one, he had a seizure. I know what you’re thinking, so did a lot of people, and I know that, because I was one of those people. So we were at home hanging out in the den, and that's when it happened. The Seizure. Yeah, yeah, yeah, I know, just sounds like you know, a seizure. But this was.......no ordinary seizure. As soon as they realized it wouldn't stop, and how bad it really was, they rushed him to the hospital in an ambulance, and my father and I drove there in his car. The seizure lasted about an hour and a half. He was on oxygen and stuff. They told my mom that he probably won't be able to read, write, walk, talk, and function like a "regular" human being. My mom said no that’s not going to happen. And as always, she made sure she got the care she needed for her son. Now, he functions like a "normal" human being. People don't even know about what happened or that he had epilepsy, because they think he's just like them. My story is a whole other story, so I'll save that for next year. So, just remember that in life, you should never give up, because you're just like everyone else, but with a special heart and soul!
Your friend Samantha <3
P.S. Feel free to email me @ email@example.com if you need a friend who truly understands what you’re going through! :)
There’s a Poem in the Calm
Written by a teacher in response to a student’s seizure
there’s a poem in the calm way I caught you today
when we were alone in a room out of class and your pen
your body began to list and your eyes rolled up like
window shades whose chords suddenly snapped
and I played the part of the great centerfielder
sliding my hands just between the grass and the ball
staying still for just a moment the crowd silent
my brain numb my heart rate s l o w i n g
we were all alone for a minute maybe two minutes that felt like days
and days that stretched to lifetimes
me in my khaki pants on the dusty floor and you?
you were somewhere else maybe over us watching me hold your head
in my hands watching me stroke your hair
there’s a poem in the calm way I dumbly sat there and watched as every
muscle tissue cell and atom that makes you
you was blasted by the same sickness suffered by the great caesar
yes, I was wondering about history and psychology,
poetry, religion, and neurology as your soul was timorously
ushered backstage and you and I were left center stage
with no script and no props the scene not properly rehearsed a director nowhere
you were shivering, shaking and I was wishing, praying
wanting a blanket from the closet or the comforter off my bed
anything warm to cool your quaking, aching limbs
i’ll never forget you now, how could I?
never forget the way the window shades rolled up
and the play I made in the outfield
and the way we sat on the floor together
and how you were forced offstage
and i’ll never forget how you trembled
as the calm came over me like poetry
By: Daniel Weinstein, published in Epilepsy USA Magazine