December 2014 / January 2015

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DECEMBER 2014 / JANUARY 2015 FACES E-NEWSLETTER

  1. CEC SPOTLIGHT: BENJAMIN KAUFMAN
  2. RECIPE OF THE MONTH
  3. BREAKING RECORDS AT THE 2014 TCS NEW YORK CITY MARATHON
  4. GAME DAY HIGHLIGHTS
  5. PUT YOUR PURPLE ON AND GET THE CONVERSATION STARTED
  6. MANAGING EPILEPSY WELL (MEW) COLLABORATING CENTER AT NYU
  7. RARE EPILEPSY NETWORK (REN) REGISTRY
  8. NOTEWORTHY NEWS
  9. CAMP CORNER HIGHLIGHTS
  10. FUNDRAISING CORNER
  11. LETTERS OF HOPE: MEET SAMANTHA
  12. A DEVICE THAT CHANGES LIVES

SEASONS GREETINGS FROM OUR STAFF

Dear Friends of FACES,

Please enjoy this holiday edition of the Insight Newsletter, which combines the December and January issues. We are so excited about our accomplishments this past year. FACES held 3 well-attended Peace of Mind lectures that can be viewed on our website – Epilepsy & Memory Treatment, Deep Breathing & Epilepsy, and Cannabidiol for the Treatment of Epilepsy, with several others planned for 2015. FACES hosted our second annual Teen Event at Dave & Buster’s; gave away $25,000 to eligible students who applied for the FACES College Scholarship Program; $30,000 to eligible children who applied to the Dr. Blanca Vasquez Summer Camp Scholarship Program; participated in the New York City TCS Marathon for the second time with 7 runners raising over $115,00 (almost DOUBLE what we raised last year); worked with our Steering Committee to create the FreshFACES Cocktail Party at espace, raising over $100,000; had a fun-filled and well attended Game Day; held an educational and informative Epilepsy Conference; increased our Facebook “likes” to well over 8,300, and created an amazing FACES video and brochure. In addition, the FACES Gala raised over $4.8 million to fund innovative research and community outreach programs. The NYU Comprehensive Epilepsy Center continues to provide world class care through our remarkable team of physicians and clinicians. Our daily updated social media sites and monthly newsletters bring us together by sharing personal stories and medical updates that keep us inspired and provide us with hope. There is much more to be done, but each day, we get closer to finding a cure.

We wish you and your loved ones a happy and healthy holiday season. Thank you for your continued loyal support.

Best wishes,
The FACES Staff

1) CEC SPOTLIGHT: BENJAMIN KAUFMAN

Benjamin Kaufman is a Research Coordinator at the NYU Langone Comprehensive Epilepsy Center. After graduating from Wesleyan University in 2012 with a degree in Neuroscience & Behavior, he assisted with cancer research protocols at Thomas Jefferson University Hospital in Philadelphia. Since joining NYU CEC in February 2013, Benjamin has supported numerous research projects, including Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs (MONEAD) and Women with Epilepsy: Pregnancy Outcomes and Deliveries (WEPOD).

Currently, he is the primary coordinator of the North American SUDEP Registry (NASR), an international research initiative based at NYU that brings together medical professionals, epidemiologists, advocacy organizations, and families with the common goal of better understanding Sudden Unexpected Death in Epilepsy (SUDEP).

Benjamin volunteers his time with Live Up, a curriculum-based program for adults with Down syndrome, as a mentor to individuals in different cities. Next summer he will be leading the organization’s first ever New York City program.

2) RECIPE OF THE MONTH

By: Courtney Glick, MS, RD, CDN

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

As the weather gets cold, here is a festive holiday dish that will keep you warm, but won’t weigh you down. This healthy soup recipe is fantastic and hearty enough to be a dinner or lunch option. The recipe makes more than 6 servings, so you can make a big batch for guests and serve it as an appetizer. You can also make it for your family and have lunch for days to come! Butternut squash is a seasonal vegetable in the Fall, so now is the best time to use it. If you want to cut back on prep time – buy a pre-cut (cubed) butternut squash, which will save you tons of cutting time. Butternut squash is rich in vitamin A (beta-carotene) – which is where it gets its yellowish/orange hue. Vitamin A is a powerful anti-oxidant and is required by the body for maintaining the integrity of skin and mucus membranes. It is also an essential vitamin for optimum eye-sight. Research studies suggest that natural foods rich in vitamin A help the body protect against certain types of cancer. Butternut squash is also rich in B-complex vitamins like folates, riboflavin, niacin, vitamin B-6 (pyridoxine), thiamin, pantothenic acid, and minerals iron, zinc, copper, calcium, potassium, and phosphorus.

BUTTERNUT SQUASH SOUP

Makes 6-8 servings
Nutrition Facts (based on 6 servings): 165 calories, 7g fat, 22g carbohydrate (4g fiber), 4g protein

Ingredients:

  • 1 medium-large butternut squash (or 1lb cubed)
  • 2 granny smith apples
  • 1 medium yellow onion
  • 6 cups of low sodium chicken broth
  • 1 sprig fresh rosemary
  • 1 sprig fresh or ¼ tsp dried marjoram
  • 1/8 teaspoon dried cardamom
  • ½ teaspoon salt
  • ¼ teaspoon white pepper
  • 1 tablespoon honey

Directions:

  1. Tie the fresh herbs in cheese cloth. Add all the ingredients to a large stock pot and bring to a boil.
  2. Once boiling turn down the heat and simmer for about 45 minutes to an hour or until all the ingredients are tender and easily broken down.
  3. Remove from heat and let cool slightly, remove the cheese cloth and add ½ cup of the heavy cream (or unsweetened coconut/almond milk for a vegan version!)
  4. Use an immersion blender (or place soup contents in a blender/food processor) and blenderize completely until everything is combined completely.
  5. Serve and garnish with some toasted walnuts and a swizzle of heavy cream or sour cream (your choice!). Can be refrigerated or frozen and reheated.

3) BREAKING RECORDS AT THE 2014 TCS NEW YORK CITY MARATHON

TeamFACES is growing bigger and stronger, leaving a larger impact on the epilepsy community with each passing race!

On Sunday, November 2nd seven runners not only crossed the finish line after racing 26.2 miles, but they collectively raised over $115,000 for FACES, setting a new record for the team. Overall, FACES was ranked among the top 25 fundraisers on CrowdRise for the entire NYC marathon charity program.

Our runners continued to spread hope and awareness to the thousands of spectators and their fellow runners as they ran through the streets of New York City. Although it turned out to be a windy day, they pushed forward to complete the race and proved that with a little determination, anything can be accomplished.

 

FACES CANNOT THANK OUR RUNNERS ENOUGH FOR THEIR COMMITMENT TO OUR MISSION AND TO THE FAMILIES OF OUR EPILEPSY COMMUNITY.

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

JOIN THE TEAM!
FACES is currently a charity partner of New York Road Runners, and race entries are now available for the 2015 United Airlines NYC Half Marathon on Sunday, March 15, 2015.

If you received an entry (not affiliated with another charity) on your own to any endurance event, we would be happy to have you fundraise for FACES on behalf of that race. Please email Alyssa Giorgio for additional information at alyssa.giorgio@nyumc.org

4) HALLOWEEN THEMED GAME DAY 2014

By: Alexandra Nicklas

On October 25th, the FACES community came together to participate in the 15th annual Game Day at the Chelsea Piers Field House. Children and their families arrived in Halloween costumes for a fun-filled afternoon carnival. All children, families, and their doctors connected to one another supporting the FACES mission. Although, I have been a patient of Dr. Devinsky and a member of the FACES steering committee for a number of years, this was the first time I attended Game Day and I’m glad I was able to see the action.

Everything one would expect to see at a carnival was present, plus more. There were games and activities for all ages. Face painting, pumpkin painting, bounce houses, games, a magician, spin art t-shirts, and gymnastics occupied the entire field house. There was also tons of delicious food to keep everyone energized for the afternoon. A hot dog stand, cotton candy machine, cookie decorating station, and an ice cream cart contributed to the carnival atmosphere. Nothing is more special than making a decorated cookie of your own! The day offered an educational component too, with NYU Langone’s dietician, Courtney Glick, and S.Q.U.A.S.H. intern, Annie Dirocco,. Both of them were offering ketogenic diet-friendly chocolate bars and lessons on healthy food choices for children and their families.

There was something for every age group to enjoy at Game Day. The youngsters rushed to the bounce house bouncing away as much as they could, while other kids played games to win FACES prizes. I played one myself and quickly knocked down the stuffed animal bears, and was excited to win my first purple FACES water bottle.

Peggy Guinnessy, CTRS, the NYU Langone Recreational Therapist and Coordinator of the FACES Parent Network, was on site offering informative materials about seizures, epilepsy, and ongoing research projects. In addition, she handed out FACES brochures, and Julie Devinsky’s book, “Is Epilepsy Contagious”.

My first Game Day attended will definitely not be my last. To see the pure happiness on the faces of so many children made it a day I will never forget. I can’t wait until next year.

 

 

More Game Day Highlights…

THEN & NOW: GAME DAY WITH CLAUDIA

Throw back:
Claudia as a child at
Game Day

Present day: Pamela
Mohr and Claudia

"I want to thank everyone who works with the FACES team. If I never went to Game Day, I do not think I would have ever realized that there were so many children dealing with epilepsy, just like me. It is hard when you feel like you are the only different student. My grandfather had to accompany me on all of my school field trips, and a classmate had to always walk with me to the bathroom and knock on the stall every time they felt I was taking too long or that I may need help (for an impatient fourth grader, that was every 30 seconds). At Game Day, I felt almost prideful to be an epileptic. That whole gymnasium was filled with children who may have felt different at school, but were normal there. We all may have needed to go to a neurologist, stay in the hospital, or have an EEG/CAT scan every once in a while, but in that place, we did not have to explain why our parents carried Diazepam rectal gel. The staff and volunteers there already knew why, and as far as they were concerned, we were just kids. We were kids who just wanted to have fun and for the first time in a long time, just wanted the opportunity to live in and remember the moment. I want to thank FACES for making me feel like the kid I was before third grade, the kid I was before the Thanksgiving that I will never remember and my family will never forget." – Claudia

5) PUT YOUR PURPLE ON AND GET THE CONVERSATION STARTED

By: Beth Emmel

Spreading epilepsy awareness in my children's school district was a huge success! My children and I presented a slideshow and then we got the conversation started about epilepsy! The students were asked 10 questions about living with epilepsy:

  1. Do people with epilepsy look different?
  2. Do all seizures look the same?
  3. Can you make a person snap out of a seizure?
  4. When a person has just had a seizure, are they aware that they have had one?
  5. Are all seizures noticed by others? Can people with epilepsy participate in sports?
  6. Ride a bike?
  7. Can they Swim?
  8. Can they be successful in life?
  9. Can they be successful in school?
  10. Can they be successful at a job?

After these questions were asked, the students were given a scenario:

You are in the neighborhood playing with two friends. One friend has a grand mal seizure. What do you and your other friends do? How do you think a person feels when they end a seizure and people are standing around them? What could you do to make your friend feel better?

The discussion was engaging and they learned so much! My theme, “Put Your Purple On and Get the Conversation Started About Epilepsy” was inspired by a letter that Dr. Doyle wrote to me! I provided the district with the resources and they displayed the materials for district families.

Now, I have some really wonderful news; the middle school principal e-mailed me. He told me that a 6th grader walked by the nurse's office and saw the epilepsy info that I asked to be displayed for the month of November. The boy went to the principal and asked if he could start up an epilepsy awareness program at the school. The principal thought my daughter would like to work on the project with him. The principal is also putting me in contact with the boy's parents. I will tell them all about FACES!

6) MANAGING EPILEPSY WELL (MEW) COLLABORATING CENTER AT NYU

By: Rachel Jurd, PhD

Dr. Orrin Devinsky and Dr. Tanya Spruill (Assistant Professor of Population Health and Medicine in the Center for Healthful Behavior Change at NYU School of Medicine) have been awarded a five-year grant from the Centers for Disease Control and Prevention (CDC) to establish a Managing Epilepsy Well (MEW) Network Collaborating Center.

One of the central goals of the Center is to adapt, evaluate, and disseminate Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) for Hispanic epilepsy patients. Project UPLIFT is an evidence-based program that incorporates cognitive behavioral therapy and mindfulness techniques to reduce depression in adults with epilepsy.

Depression is one of the most common psychiatric disorders among people with epilepsy: 25-40% report suffering from depression. It impacts quality-of-life to an even greater extent than seizure frequency and is a significant contributor to premature mortality in epilepsy patients. Project UPLIFT was created to help people with epilepsy better understand and cope with depression. It is a home-based program that consists of 8 weekly sessions (1-hour in length) delivered through the internet or telephone by a trained mental health professional.

“Project UPLIFT has been shown to be effective in reducing depressive symptoms”, says Dr. Anuradha Singh, a Clinical Associate Professor of Neurology at NYU School of Medicine and Director of the Epilepsy Center at Bellevue Hospital. “With the CDC award, we now have an opportunity to adapt the program for Hispanic and Latino patients. I am thrilled to be a part of this study and look forward to implementing the program at Bellevue Hospital and improving treatment options for people with epilepsy and co-morbid depression”.

The CDC award involves collaborations between the NYU School of Medicine (Departments of Neurology, Population Health, and Medicine), Bellevue Hospital, the NYU-City University of New York (CUNY) Prevention Research Center (PRC), and Emory University.

For more information about the MEW Network

For more information about Project UPLIFT

7) RARE EPILEPSY NETWORK (REN) REGISTRY

The Rare Epilepsy Network (REN) was formed to expedite research into the rare epilepsies. Rare disorders associated with seizures or epilepsy include: Aicardi Syndrome, CDKL5 Disorder, Dravet Syndrome, Dup15q Syndrome, Hypothalamic Hamartoma, Lennox-Gastaut Syndrome (LGS), Ohtahara Syndrome, PCDH19 Female Epilepsy, Phelan-McDermid Syndrome, and Tuberous Sclerosis Complex (TSC).

The REN is collaboration between the Epilepsy Foundation, Research Triangle Institute, Columbia University, NYU Langone Medical Center, and ten foundations that represent patients with a rare disorder associated with seizures. With seed funding from the Patient-Centered Outcomes Research Institute (PCORI), the REN has orchestrated a patient registry to collect information about rare epilepsy patients to better understand these conditions.

Though each syndrome is different, patients with rare epilepsies share many common seizures, symptoms, and side-effects. The more patients that join the REN Registry, the more information that researchers and clinicians will have about each rare epilepsy and the faster researchers will be able to understand their cause, improve treatments, and develop cures.

“The REN is a unique opportunity for families touched by rare epilepsy syndromes to partner with researchers to learn more about these conditions”, says Jacqueline French, MD, a Professor of Neurology at NYU Langone Medical Center and a Consultant Neurologist for the Rare Epilepsy Network. “I am excited about what we will learn and how we can use that knowledge to improve care”.

To enroll, please visit the Rare Epilepsy Network. Registry enrollment is simple. You or your caregiver will be asked to fill out a Registry Questionnaire – it’s just like giving a history of epilepsy at the doctor’s office. The information that you provide will be stored in a secure database; information is given to researchers in an anonymized form (without names or other identifying information of participants).

Want more information? Please visit the Epilepsy Foundation or REN websites.

8) NOTEWORTHY PRESS

Top 10 National Press Articles

  1.  DIET STOPS SEIZURES WHEN EPILEPSY DRUGS FAIL
  2. GW PHARMACEUTICALS COMMENCES PHASE 2/3 CLINICAL TRIAL OF EPIDIOLEX(R) AS A POTENTIAL TREATMENT FOR EPILEPSY IN DRAVET SYNDROME
  3. CANNABINOID SCIENCE ADVANCEMENTS FUEL LATEST CLINICAL TRIAL DEVELOPMENTS FOR EFFICACY OF CBD THERAPIES AND PATENTS - COMPANY ENTERS STAGE 2 OF TRIALS FOR CANNABINOID COMPOUNDS
  4. BUHL STUDENT EDUCATES CLASSMATES ABOUT EPILEPSY
  5. CRMC DOCTOR FIRST TO EARN EPILEPSY CERTIFICATION IN WYO
  6. SEVERE EPILEPSY PINNED ON DNA MUTATION, SCRIPPS SCIENTISTS REVEAL
  7. UNIVERSITY RESEARCHERS DEVELOP SOFTWARE TO PREDICT SEIZURES
  8. FAMILY PUSHES TO LEGALIZE MARIJUANA TO HELP SON'S SEIZURES
  9. STEM CELL TRANSPLANTS MAY HELP REDUCE SEIZURES, STUDY SAYS
  10. BRAIN INJURY, EPILEPSY AND BRAIN SURGERY CAN’T STOP THIS MT. AIRY ARTIST

9) CAMP CORNER HIGHLIGHTS

Gratitude from Brainy Camps/ Camp Great Rock

Dear FACES:

On behalf of Brainy Camps Association, we thank you for funding $6,175 that provided scholarships for nine campers who attended Camp Great Rock 2014, our camp for children with epilepsy.

In 2014, Brainy Camps Association offered a 7- day residential camp for those with epilepsy. Campers had the opportunity to enjoy traditional camp activities, including swimming, hiking, fishing and boating, as well as activities that were a bit more unusual, including horse back riding, driving a go-cart, and climbing a rock wall. Campers lived with other individuals with epilepsy while under the supervision of medical professionals and counselors trained to deal with chronic health conditions, allowing their families to enjoy a week of worry-free respite.

Brainy Camps Association, a 501 (c) (3) charity, is a consortium of residential and family camps, retreats, and services for children with chronic health conditions. With the help of over 125 volunteers, we serve more than 425 children and their families each year. Our mission is to create healthy communities where partnerships between patients and doctors are promoted, independence and self-management are encouraged, educations is offered, social connections are supported, and the impact of condition specific camps is studied. The long-term goals of our interventions are to encourage independence, self-efficacy, self-advocacy, and positive well-being.

Again, we thank you for your generosity and your support of children with epilepsy.

With much gratitude,

The Brainy Camps Association

FOR MORE INFORMATION ABOUT THIS CAMP:

Brainy Camps website: www.brainycamps.com

Sandra Cushner Weinstein, PT, LCSW-C
Director, Brainy Camps
scushwei@childrensnational.org
202-476-5142

Susan Mehlman, Ph.D.
Assistant Director, Brainy Camps
smehlman@cnmc.org
202-476-3181

10) FUNDRAISING CORNER

VIOLETS TEAM UP WITH CHIPOTLE FOR FACES

By: Angie Gokhman

FACES served as NYU Hockey’s “charity of the game” on November 7th as the Violets battled with the Rensselaer Polytechnic Institute Engineers at the Chelsea Piers Sky Rink.

Violet team members and Pamela Mohr.

The Violets got some help from the East 8th Street Chipotle location, which donated half of their sales from 2pm to 6pm to FACES. NYU Langone Medical Center also provided the Violets with FACES merchandise for fans who donated at the game. The Violets were able to raise nearly $400 for FACES.

"We learned about FACES through the Gargan family who introduced us to epilepsy,” NYU head coach Chris Cosentino said. "We wanted to help our good friend Sean who has become a big part of our team and suffers from the disease. Sean and his family have developed a great relationship with senior Eric Basmajian, who is a cancer survivor.”

"What we as a team have learned about epilepsy is how unpredictable the condition is,” Basmajian said. "Often, there is no rhyme or reason for an onset of symptoms. It really forces you to take each day one at a time."

The Violets will have a “charity of the game” at each home game this season as they continue to form a stronger bond with both the NYU community and the city at large.

AFTERNOON TEA WITH THE STARKS

Candice and Syklar

Drs. Dugan, Vazquez, Bluvstein,
Devinsky and French

FACES is pleased to announce that the first annual Women’s Afternoon Tea on Wednesday October 29th, hosted by Candice and Skylar Stark, raised nearly $70,000 with 85 attendees. The event was extremely meaningful and offered a rewarding afternoon. Candice made the opening remarks, followed by her daughter Skylar, and Dr. Orrin Devinsky.

Candice chose to host the tea in honor of her daughter Skylar, who is under the care of Dr. Devinsky. Today, Skyler lives practically seizure-free and has close to the quality of life all parents want for their children.

Monies raised will aid in starting an epilepsy awareness program that will help to educate people and significantly reduce the stigma attached to this disorder.

 

11) LETTERS OF HOPE: MEET SAMANTHA

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

Throughout my college career I have spent the past two years participating in the Indiana University Dance Marathon. This year will be my first year on the morale committee in which I am responsible for maintaining the highest level of energy throughout the entire marathon. Many have asked me why I have participated in this amazing organization and I would like to share my story.

For most children, the age of 10 is a time where they feel more independent. An age where they say, “Yes! I’m finally entering the double digits!” For me, the age of 10 consisted of many trips to a neurologist and reoccurring visits to the Saint Barnabas Hospital. On January 16th 2003, I had fainted for the first time. My petrified mother found me unconscious on the tile floor of my kitchen. The next thing I remember is waking up with a wet head of hair on the couch with no recollection of how I got there. Apparently my mom had thrown me in the shower to try and wake me up, which explained my wet hair but unaware of the problem that caused it.

Unfortunately it was not a one-time thing. In the winter of 2004 I was finally diagnosed with epilepsy ( AKA a Seizure disorder). I had numerous episodes at home, in public venues, and the most terrifying place for any child, the playground. While I was put on mass amounts of medication to help grow out of the disorder, it had its fair share of side effects. When it came to schoolwork, retaining the information became more difficult. I would study 10 hours for a science test and fail it due to the medication. Not only did my schoolwork become 5 times harder than everyone else’s, I also had some personality changes. I was found being rude to other kids in class, intolerable, and also thought of as “that girl” who fainted on the monkey bars.

Thankfully I was able to get the help I needed from a man who understood the disorder and prescribed me with the right form of medication. Dr. Orrin Devinsky, if you are reading this, please know that I thank you for all your help and commitment. You truly did save my life. I have grown out of epilepsy, but it has certainly changed my life forever.

12) A DEVICE THAT CHANGES LIVES

FACES Needs Your Help

With the help of our fantastic FACES community, the 2014 FACES Gala Auction included 375 exclusive packages and helped the Gala raise over $4.8 million to support our mission and programs. FACES is now accepting donations for the 2015 Gala, being held at Pier Sixty at Chelsea Piers on Monday, March 2, 2015. Help us make this year’s auction bigger and better! Our auction is one of the largest in New York, and includes items such as designer bags, sporting events, high-end electronics, vacation packages, fine jewelry and much more.

If you are interested in donating items to the 2015 Gala Auction, please contact Alyssa Giorgio at alyssa.giorgio@nyumc.org

PLEASE CLICK HERE TO VISIT THE PEACE OF MIND LECTURE PAGE