November 2015

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NOVEMBER 2015 FACES E-NEWSLETTER

  1. RECIPE OF THE MONTH
  2. THE STARK FAMILY AND FRESHFACES
  3. GAME DAY 2015
  4. KETO KIDS CLUB EVENT
  5. MEET THE FACES GALA AUCTION CHAIRS
  6. A MEANINGFUL GIFT
  7. NOTEWORTHY NEWS
  8. TWENTY-20S

1) RECIPE OF THE MONTH

By: Pegah Jalali MS, RD, CNSC, CDN

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

PUMPKIN ALMOND OATMEAL

Our days are getting shorter which makes getting up in the morning harder and eating breakfast a bit more challenging. Skipping breakfast can predispose us to grab high sugar and salt foods and eat larger quantities. This is an easy/simple make ahead breakfast recipe that can be prepped ahead of time and enjoyed cold or warm.

INGREDIENTS:
1 tablespoon of pumpkin, canned-unsweetened Cinnamon, ground to taste
3 tablespoons (or you can use oats) of whole ground flaxseed meal
2 tablespoons of almond butter, raw creamy organic
1 teaspoon of oil, coconut - unrefined (regular or organic)
1 Stevia, liquid drops, to taste
¼ cup of water

DIRECTIONS:
For hot oatmeal:
1. Mix all ingredients together in a small bowl (except the cinnamon).
2. Microwave in 30-second intervals, for approximately 2 minutes, stirring each time until thickened to desired consistency.
If you like a thinner consistency of oatmeal, try adding a little water or calculate in some unsweetened almond milk!
3. Sprinkle cinnamon on top.

For a cold oatmeal cereal, mix ingredients together and sprinkle cinnamon on top immediately before serving.

Want to change it up?
This recipe works really well with many different flavors. Try some of the ideas listed below.

  • Fruits like pears, apples or raspberries instead of pumpkin
  • Spices or flavor extracts like vanilla, nutmeg or caramel instead of cinnamon
  • Chia seeds instead of flax seeds
  • Different nut butters like peanut or walnut butter instead of almond butter
  • Butter, coconut manna or ghee instead of coconut oil

Be sure to check this recipe and consult with your dietitian for any modifications. Ketogenic diets are highly individualized treatments and this recipe should only be used as a guide.

2) THE STARK FAMILY AND FRESHFACES

My family and I have been a part of FACES for as long as I can remember. The support this organization provides my sister, Skylar, enables her to be one of the most physically active young adults I know. Last year, my mother told me about the inaugural FreshFACES event. It was natural that I attended and invited a few of my friends. It was a fun evening that I posted about on social media. Over the next couple of weeks, many of my friends asked me why I didn’t invite them, which I should have done. These interested friends encouraged me to reach out to the FACES team to see how I could be more involved in planning the following year’s event. My goal was to help sell more tickets and raise more money.

After a few calls with the original planning committee, we decided that a key consideration to grow the event was to build out a behind the scenes team. I did some initial outreach and it was truly unbelievable to see how supportive my friends were in getting involved. We decided to have an in-person committee meeting and over 15 people showed up! This was the first really encouraging sign that the second year’s event could be a big success.

The FACES team worked with the committee members on getting live auction items, FreshEXPERIENCE stations, and creating a marketing plan to help improve the event’s attendance and sponsorship. With a wide range of experience in many marketing and event planning facets, this new committee created a strong social and email marketing plan to spread the word about FreshFACES. With a final push on the day of the event, I’m proud to say that the 2nd annual FreshFACES was a MASSIVE success. The event raised over $100,000 in profit – a 66% increase over the first year. Additionally, the event built out its donor base from primarily existing FACES members to include more young adults who did not previously have a connection to the organization. The momentum and excitement from the event is still being felt!

I know the committee is really looking forward to next year where we plan to not only beat this year’s numbers, but also implement more frequent events at a lower price point to engage an even larger donor base. The future is bright with Dr. Orrin Devinsky’s leadership. My friends and I are confident that we WILL find a cure for epilepsy and seizures.

Here are a few photos from this year’s event!

3) GAME DAY 2015

By: Sharon Perhac

When asked, “Do you know how to play the Lollipop Game?”, the very confidant 14 year old replied, “Of course I do, I’ve been coming to Game Day since I was 9 and it is one of my favorite days of the year!” This is one of the many reactions we receive each and every year. And so, for the 16th year on October 24th, Game Day, once again, hosted over 400 members of the FACES community.

This year’s theme, “Set Sail with FACES”, was a perfect backdrop for all the fun filled activities including an inflatable wave slide, carnival games, nautical ceramic painting, cookie decorating, face painters, balloon artists, a costume contest, and a magic show just to name a few.

Being part of this special event from the very beginning has been an amazing honor for my family. There is nothing more rewarding than to see all the parents and children with epilepsy and their siblings enjoying every moment of Game Day as if nothing else in the world mattered. Game day is all about saying “yes!” Yes, you can swing the bat in the baseball cage. Yes, you can climb the rock wall. Yes, you can jump on the trampoline. Yes, you can do anything and not let epilepsy stand in your way. See you next year!

2015 Highlights:

  • 2006 Women’s USA Hockey Team bronze medalist, Chanda Gunn hosted the day, along with NYU Langone’s Dr. Orrin Devinsky
  • Pegah Jalali, MS RD CNSC CDN, nutritionist at the NYU Comprehensive Epilepsy Center, sampled ketogenic friendly foods and shared recipes with participants
  • Over 400 attendees made this year’s event one of the most successful ever
  • We expanded the arts and crafts offerings, including cookie decorating, ceramic painting and spin art tees
  • Little ones participated in the action, through the toddler gym and the animal land inflatable play center
  • Every child received a FACES baseball hat and a FACES drawstring bag.

Enjoy some photos of this exciting day

4) KETO KIDS CLUB EVENT

The first annual Keto Kids Club event took place on Thursday, October 22nd at the Saint Barnabas Ambulatory Care Center in Livingston, NJ. World renowned neurologists, mixed with parents of children with neurological disorders, discussed an alternative therapy for children - the ketogenic diet. Prescription medication might not be the right answer, but maybe an age-old diet will work.

The event featured guest speakers, Dr. Orrin Devinsky, Director of the NYU Langone Comprehensive Epilepsy Center, Dr. Eric Kossoff, Assistant Professor of Neurology and Pediatrics at Johns Hopkins Children’s Center, and Dr. Paul Jaminet, author of “The Perfect Health Diet”. With the help of NYU Langone dietitians, they highlighted a panel of ketogenic patients ranging in age from 3 to 30. Companies that produce ketogenic foods such as Cambrooke Therapeutics, Nutricia, Glut 1 Foundation, Squirrel and the Bee Grainless Bakery, Vitaflow, Zipscicle and Chocoperfection, shared recipes, sampled products, and educated the community throughout the event.

The Keto Kids Club was founded by the parents of three children with neurological disorders. Scott Yucht, Renee Klein, and Michelle Sanders felt a mission to build a community focus on support, education and securing resources that can improve administration of dietary options. There are very few social communities for children on the ketogenic diet and their caregivers. Because children and caregivers often feel isolated and have limited resources, there is an ever growing need to address these issues.

"The wonderful turnout for our event told us that there are many families looking for alternatives to help their children. It was a personal joy to give a round of applause during our event, to the first ketogenic family admitted to Saint Barnabas Hospital in Livingston New Jersey.” said Michelle Sanders, one of the founders of Keto Kids Club and the host of the evening's program.

A lot of work is needed to raise awareness, but this event was a great start to continue the tireless work of the Charlie foundation, Matthew’s Friends, FACES and all of the dedicated healthcare professionals across the world.

Enjoy some photos

5) MEET THE FACES GALA AUCTION CHAIRS

Josh and Melisa Fluhr are excited and truly honored to participate in the 2016 FACES Gala as Auction Co-Chairs. Josh is the COO of Morgans Hotel Group and Melisa is Co-Founder of the website, ProjectNursery.com. Their oldest son Austin, now 8, began suffering from seizures when he was an infant. Melisa shares, “It was an incredibly stressful and difficult time of uncertainty as new parents. We very much felt alone and quite frankly, the doctors couldn’t really tell us what was going on except that this was a condition we all had to learn to deal with. Moving to NYU and speaking with Dr. Orrin Devinsky made us realize that we weren’t alone.” In a recent conversation with Josh, he said “We specifically remember the first office visit to NYU Langone Comprehensive Epilepsy Center and how much it meant to us that Dr. Devinsky saw us in person as he does with all his patients. It was impressive that his entire team including nurse practitioner, Erin Conway, were such an amazing group of compassionate individuals that were all there to help us through this scary time.” Today, Austin has been seizure-free for the last three years and FACES has become the Fluhr family’s “cause”.

With the help of our fantastic FACES community, the 2015 FACES Gala Auction included 375 exclusive packages and helped the Gala raise over $4.9 million to support our mission and programs. FACES is now accepting donations for the 2016 Gala, being held at Pier Sixty at Chelsea Piers on Monday, March 7, 2016. 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 2016 Gala Auction, please contact Marisa Maltese at marisa.maltese@nyumc.org.

6) A MEANINGFUL GIFT

$1M GIFT TO SUPPORT:

FACES and The SUDC (Sudden Unexplained Death in Childhood) Foundation

Investigators: Orrin Devinsky, MD; Laura A. Crandall, MA; David B. Goldstein, PhD; Dale C. Hesdorffer, PhD; Michael J. Ackerman, MD, PhD

Sudden Unexplained Death in Childhood (SUDC) is a rare but devastating cause of childhood death, affecting children over 12 months of age and remaining unexplained even after a thorough autopsy and case investigation have been conducted. The incidence of SUDC is reported to be 16-40 times lower than that of Sudden Infant Death Syndrome (SIDS), the most common cause of post-neonatal infant death—although this figure is likely underreported due to inconsistent coding of SUDC among coroners and medical examiners. SUDC has been severely under-researched, and there is an enormous gap between our understanding of it and other causes of childhood death.

While risk factors for SUDC are largely unknown, some similarities exist between SUDC and SIDS cases, including the unexpected nature of the death in apparently healthy children, a higher occurrence in males and a relation to sleep periods. The age of SUDC deaths overlaps with that of pediatric SUDEP deaths, meaning an exploration of the risk factors associated with SUDC promises to also shed light on SUDEP. Systematic research of SUDC has been limited by its low incidence, inconsistent forensic classification, and a lack of widespread awareness. Indeed, the only group currently collecting systematic data on SUDC in the United States is the SUDC Foundation (co-founded and under the direction of Laura A. Crandall, MA)—a critical partner in our proposed study. Composed of experts in sudden deaths, clinical phenotyping, epilepsy, cardiology, genetics, epidemiology, and phenotypic-genotypic relationships, our multidisciplinary team is in a unique position to move forward now with the first systematic study to elucidate risk factors for SUDC.

To identify clinical risk factors, the team will undertake a case-controlled retrospective study focused on children aged 1-6 years, taking into consideration factors such as patient and family medical history, pregnancy or birth complications, and environmental factors. To identify genetic risk factors, they will perform whole-exome sequencing on blood and tissue samples from SUDC cases, obtained by collecting referrals to the SUDC Foundation where there is DNA available from the deceased child and both biological parents, to screen for inherited and/or de novo mutations.

Their findings could inform the development of screening tools and preventative strategies to enable greater seizure control, reduce the incidence of SUDC, and save young lives. Further, discovery of SUDC’s underlying causes could contribute to the development of new public health programs, modeled after existing programs for SIDS that have contributed to a more than 50% decline in incidence since 1994. Finally, this work could provide a sense of closure to families of victims, and assist in identifying family members who may be at risk for sudden death.

FACES Gala 2016 is taking place on Monday, March 7th and will fittingly pay tribute to the SUDC President and Executive Director, Laura Crandall. The inconceivable loss of her 15-month old daughter in 1997 ignited a personal crusade to help others. She embarked on a journey that ultimately led to the Sudden Unexpected Death Data Enhancement and Awareness Act (H.R. 669), which was signed into law by President Obama on December 18, 2014. This law’s provisions are extremely vital to our studies because a third of SUDC cases have a history of febrile seizure, linking SUDC and epilepsy.

7) NOTEWORTHY NEWS

Top 10 National Press Articles

1) Could Marijuana Chemical Help Ease Epilepsy?

2) Turning the Apple Watch into a seizure detector

3) How Removing Half of Someone’s Brain Can Improve Their Life

4) This is What Bad Grammar Does to Your Brain

5) Patient Gets Seizure from Solving Sudoku Puzzle

6) New York Sports and Beyond

7) Keto Kids Club to Host First Annual Event for Families Dealing with Epilepsy Oct. 22

8) Marijuana as Medicine

9) How Do Video Games Affect The Brain?

10) Helping your roomate live with epilepsy

8) TWENTY-20S

Our FACES community member Julia Buldo-Licciardi would like to introduce you to the first online support group for young adults living with epilepsy, as she is one of twenty founding members of this international young adult’s epilepsy awareness group.

The “Twenty-20s” initiative was created after twenty young adults from the United States of America, Canada, Puerto Rico and Jamaica gathered in July 2014 in Washington, D.C. to participate in the “Young Adult Epilepsy Summit” organized by the North America International Bureau for Epilepsy (IBE) and the Epilepsy Foundation of America, Inc. This weekend-long event was filled with workshops and discussions regarding issues associated with epilepsy. A popular topic was the stigmas and misconceptions amongst the general public regarding this condition. As a result, ideas were gathered to develop a social media initiative that would raise awareness through personal stories of those living with epilepsy as well as those affected by a family member who has epilepsy.

The aim of this social media project is to change the image of people coping with epilepsy by portraying how these twenty young individuals in their twenties have overcome struggles and have become successful in their own ways. We want to empower and inspire other young adults who have also been affected by epilepsy to pursue their dreams despite adversity.

The work of the “Twenty-20s” continues to be a collaboration between the Canadian Epilepsy Alliance and Epilepsy Foundation of America with funding from International Bureau for Epilepsy (IBE).

To learn more about the “Twenty-20s” and support this project, please follow Twenty-20’s Epilepsy Awareness Group on Facebook and @twenty_20s on Twitter.

To contact the group, please either comment in the group’s community posts on Facebook or e-mail twenty20sepilepsy@gmail.com. We look forward to hearing from you!.