April 2014

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APRIL 2014 FACES E-NEWSLETTER

  1. CEC SPOTLIGHT: VERONIQUE RUPPE, PHD
  2. FACES GALA 2014
  3. RECIPE OF THE MONTH
  4. FACES NOTEWORTHY PRESS
  5. NYU COMMUNITY BRAIN FAIR
  6. FUNDRAISING CORNER: JORDAN’S SUCCESS
  7. SEIZURES AND BRAIN TUMORS

1) CEC SPOTLIGHT: VERONIQUE RUPPE, PHD

Véronique Ruppe, PhD, is a Research Coordinator at the NYU Comprehensive Epilepsy Center (CEC). Originally from Strasbourg, France, she attended the Université Louis Pasteur, where she obtained a B.S. in Biochemistry and a Master’s degree in Genetics. In 1998, Véronique came to the United States and began working as a lab technician at SUNY Stony Brook. While there, she enrolled in a graduate program in Molecular and Cellular Biology. In 2000, she transferred to The Rockefeller University.

She obtained her PhD in 2006, investigating the role of the laminin gamma 1 gene in mouse brain development when she realized that these mice had seizures. This piqued her interest in the field of epilepsy, and, following the completion of her PhD, she was motivated to take a position at NYULMC working for neurosurgeon Howard Weiner, MD, as an Associate Research Scientist. In that role, she collected and analyzed brain tissue from epilepsy patients with a focus on tuberous sclerosis complex (TSC). This research gave clinicians better insight into the molecular causes of epilepsy in TSC patients, which may lead to better drug development.

In 2010, Véronique expanded this research project to include studying on how brain inflammation may lead to seizures (and vice versa), supported by James Shaw’s grant through FACES. To date, Véronique has collected and performed research on over 100 human specimens. In order to promote research for a better way to treat seizures, she is in charge of allocating tissue from the NYU Epilepsy Brain Bank to epilepsy researchers throughout the world.

Véronique was featured in the Joey Lowenstein Foundation video titled “Bridging the Gap”, which was produced to underscore the importance of epilepsy research. You might recall the story about Joey Lowenstein in the May 2013 Insight E-Newsletter titled, “Autistic Teen Leader Wows Me at NYU Gala.”

In 2013, Véronique transitioned to clinical research, and is currently a research coordinator in Clinical Trials at the CEC. In this new role, she is able to focus on patient care. With her background in epilepsy research, she is uniquely suited to pair patients suffering from difficult to treat seizures with new drug and device trials that might provide a more effective way of managing their condition.


2) FACES GALA 2014

BY: LUIS VALERO

Dr. Orrin Devinsky, Katie and Todd Boehly

Monday, March 3rd, was a memorable and inspiring evening for the FACES community. Over 750 guests converged at Pier Sixty at Chelsea Piers to attend the 2014 FACES Gala and salute Dr. Temple Grandin, distinguished professor, inventor, best-selling author and well-respected authority in the fields of animal science and autism education. Gala Chairs, Katie and Todd Boehly, and Dr. Orrin Devinsky, FACES founder and Director of the Comprehensive Epilepsy Center at NYU, welcomed guests who traveled from all over the country and the globe, as far as Hong Kong. The evening had its share of “dynamic duos” - David Remnick, Pulitzer Prize winning journalist, and Brian Williams, of NBC Nightly News, lent their inimitable wit and incredible talents as co-emcees; Carol Pressler and Lauri Herman served as Auction Co-Chairs; and mother-and-son team of William and Elisa Moller served as voices of grateful patients and families who have benefited from everyone’s generosity. C. Hugh Hildesley of Sotheby’s proved to be master of his craft as the evening’s auctioneer.

Dr. Temple Grandin

Dr. Robert I. Grossman, Dean and CEO of NYU Langone Medical Center, delivered the welcome remarks. Dr. Devinsky’s keynote address expressed grateful appreciation on behalf of FACES and the Comprehensive Epilepsy Center to everyone who contributed in making the gala a success, sharing this past year’s notable accomplishments and on-going and future research endeavors, programs and services. Special guest, renowned neurologist and author Dr. Oliver Sacks, CBE, joined Dr. Devinksy at the podium to introduce Dr. Temple Grandin, who eloquently delivered her acceptance remarks.

William Moller

New records were achieved with the Live Auction and Live Appeal. This year, for the first time, FACES introduced an “online” auction component, making the vast collection of over 350 items accessible to a wider audience. Overall, the combined proceeds from the auction and live appeal amounted to $825,000, reflecting a 24% increase from the previous year.

An equally important highlight of the occasion was the official launch of the brand new FACES video (visit www.nyufaces.org to watch the video) that was generously underwritten and produced by FACES Advisory Board member, Veronica Mainetti.

David Remnick, Brian Williams & Esther Fein

The FACES Gala is the major source of funds that provide for mission delivery programs and services, which include cutting-edge research, education, and community-building initiatives. To date, FACES Gala 2014 has raised nearly $4.7 million.

 

3) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

Roasted Carrot & Ginger soup is bright, flavorful, and the perfect dish for this time of year when we are desperately ready for spring, but still battling colder temperatures. This is great served with a piece of thickly sliced bread as a light lunch. This soup can also go alongside a salad or hearty sandwich if you’re craving something more.

As for the specific health benefits: the parsnips in this soup contain niacin, an important B vitamin in energy metabolism, and vitamin C, which is key in promoting a healthy immune system. Similarly, carrots, from which this dish gets its rich color, are an excellent source of beta carotene and vitamin A. These are notable antioxidants, which work to boost your immune system, protect against free radicals, and may even lower your risk of heart disease and certain cancers. Finally, with one serving of this soup, you will be consuming 20% of your daily value recommendation of fiber. Fiber is increasingly being known as the cornerstone of a healthy, well-rounded diet as it helps to lower cholesterol, control blood sugar, and generally make you feel fuller faster so you are less likely to overeat.

ROASTED CARROT AND GINGER SOUP
By: Jessica Widom

Serves 4

Nutritional Analysis (per serving) 91 calories, 1g fat, 5g fiber, 1g protein

Ingredients:
1 lb. carrots, peeled and chopped
½ lb. parsnips, peeled and chopped
½ large onion
1-2 inch piece raw ginger (depending on desired spice level)
1 tablespoon of light brown sugar
1 teaspoon of cayenne pepper
4 cups low-sodium vegetable broth
Salt and pepper to taste
Green onions for garnish

Directions:
Preheat the oven to 350 degrees F. Peel and chop carrots, parsnips, onion, and ginger and combine in a roasting pan. Sprinkle with brown sugar. Pour 1 cup of the broth into the pan, cover with aluminum foil, and bake for 2 hours. Remove from oven; transfer the vegetables and broth to a large soup pot and add remaining 3 cups of broth. Add salt, pepper, and cayenne (depending on desired spice level). Bring to a boil, reduce the heat, and simmer for 15 minutes. Using an immersion blender, puree the soup adding more broth if necessary. Garnish with sliced green onions.


4) FACES NOTEWORTHY PRESS

Top 10 National Press Articles

  1. Medical marijuana: Treatment, oil could reduce kids' epileptic seizures, but it remains illegal in Pa.
  2. Cannabis Madness’ Revives Debate Over Medical Marijuana and Epilepsy
  3. Kentucky Senate Passes Bill Legalizing Marijuana Oil To Treat Childhood Epilepsy
  4. Easing Epilepsy With Battery Power
  5. Black Tie International: NYU Langone Medical Center's FACES Gala
  6. Epilepsy myths busted at art exhibit
  7. Charlee, six, with seizure disorder dies days after namesake law is passed allowing hemp oil to be used for sick children
  8. Marijuana research hampered by access from government and politics, scientists say
  9. Putting a positive spin on epilepsy awareness
  10. Alabama Just Approved Cannabis Extracts For Epileptic Kids

5) NYU COMMUNITY BRAIN FAIR

By: Rachel Jurd, PhD

CEC Research Coordinators Rachel Hennessy and
Ben Kaufman volunteering at the epilepsy booth.

The NYU Community Brain Fair was held on March 12th as part of Brain Awareness Week. Multiple interactive exhibits and information about neuroscience research and clinical neurology at NYU Langone Medical Center were featured to help raise public awareness about the importance of brain research. Researchers from The Neuroscience Institute, the Comprehensive Center on Brain Aging, the Child Study Center, and the Rusk Institute on Rehabilitation Medicine were all on-hand to discuss learning and memory, the brain and aging, brain rehabilitation, and many other topics.

The Comprehensive Epilepsy Center (CEC) hosted a booth together with FACES and the Nathan Kline Institute (NKI) to highlight epilepsy research. A wristband that monitors physiological signals in real-time, including heart rate and skin conductance, was featured. Such a device is being piloted in a clinical research study at the CEC to test whether it will prove valuable in monitoring seizures in epilepsy patients. A smartphone app that features an electronic diary to record seizures and medication use was also on display. In addition, an exhibit that featured brain slices from an animal model of epilepsy illustrated the damage that can occur to neurons as a result of chronic seizure activity.

Dr. William Barr discusses the
latest in memory treatments

A number of Special Lectures were open to the public as part of the Fair. Dr. William Barr, the Chief of Neuropsychology at the CEC and Associate Professor of Neurology at the NYU School of Medicine, presented a talk entitled "Enhancing Memory: Fact or Fiction?". Dr. Barr discussed the latest in memory treatments, including various drugs, brain training games, and neurostimulation devices that are being tried and tested in an effort to enhance memory. A video of Dr. Barr’s lecture is available here.

Finally, this event would not have been possible without the efforts of many people who volunteered their time to plan and organize the day. Special thanks to Heather McKellar (Neuroscience Institute), Sloka Iyengar (NKI), Ben Kaufman (CEC), Rachel Hennessy (CEC) and the FACES team.

 

6) FUNDRAISING CORNER: JORDAN’S SUCCESS

Judy & Jordan

I am a firm believer that money should only be spent in ways that lead to a better society as a whole. I was also brought up to help those who had previously helped me as a way to express my gratitude. After visiting countless doctors, Dr. Orrin Devinsky was the only one to diagnose me with epilepsy. It took only five days for him to determine that what my family and I were calling “episodes,” were in fact seizures. He didn’t make me wait for a bed and I was checked into NYU Langone the very next day.

As a result of the individualized attention that I received at NYU, I decided to start a fundraising page for FACES. My FACES fundraising page represents hope and forward movement - giving individuals the opportunity to spend their money on something important and meaningful. For those less fortunate, it serves as an educational tool – teaching them about epilepsy and enabling them to inform others. I am committed to raising both funds and awareness.

While in the hospital, I realized the form of epilepsy that I have is extremely mild. Since I knew what this disease could do even in its mildest form, I shuddered at the thought of having to live with a more intense version. I consider myself lucky. I made it through a difficult time, and as a result feel that I now need to help others. Raising money and awareness to try and find a cure for this terrible disease are ways that I, a mere college student, can truly make a difference.


7) SEIZURES AND BRAIN TUMORS

By: Sloka Iyengar, PhD

The central nervous system (CNS) consists of the brain and the spinal cord, and tumors in either of these areas are known as ‘brain tumors’. A tumor is an abnormal mass of cells that could be present either at birth (congenital) or may manifest during adulthood. An important contributor of morbidity in patients with brain tumors is the presence of seizures. There are more than a hundred types of brain tumors, and the prognosis depends on the location and type of the tumor. An actively growing tumor can kill healthy cells nearby, disrupt their function, press on nearby brain structures, or disrupt nerve signaling between neurons. Brain tumors can be ‘benign’ (slow growing masses that have a defined edge and usually do not spread to other parts of the body), or ‘malignant’ (quick invading, with hard-to-define edges and invade surrounding tissue). Another way of classifying brain tumors is by using a ‘grading’ system – grade I tumors (grow slowly, do not spread to other parts of the brain), grade II (also grow slowly and have a possibility of becoming a higher-grade tumor), grade III (malignant and spread very quickly to other CNS tissue, and for the most part, respond to aggressive treatment regimen) and grade IV (do invade nearby tissue and show resistance to treatment). The most common type of brain tumors are gliomas – these are tumors are of cells called ‘glia’ (Greek for ‘glue), and are most often associated with seizures. Currently, brain and spinal cord tumors are not preventable.

The symptoms of brain tumors are headaches that may become progressively worse, loss of balance and coordination, loss of muscle control and changes in personality and behavior. Seizures could be obvious or subtle (sub-clinical), and may include loss of consciousness and bladder control. Other symptoms include dizziness, paralysis, vomiting, pain, numbness, altered sensation of the skin to temperature, motor weakness or spasticity, ataxia, paralysis and decreased muscle strength.

Brain tumors can be diagnosed by neurological exams comprising of assessment for movement and motor skills, reflexes, mood, behavior, vision etc. Tests such as Computed Tomography (CT) scan and Magnetic Resonance Imaging (MRI) are useful, as are angiograms that are used to distinguish between tumors that have a distinctive pattern of blood flow.

It is estimated that more than 359,000 people in the US are living with a diagnosis of brain tumor, and approximately a quarter to half of all people with brain tumor will experience a seizure at least once during their illness. It is not known why seizures occur in some people with brain tumors; however, there are two main schools of thought. Cells in the tumor can release glutamate- this neurotransmitter can cause excessive excitation and seizures. Another reason is that tumors occupy space and press on structures in the brain causing a mechanical effect like edema (swelling), ultimately leading to seizures.

Since seizures can be a considerable source of morbidity in people with brain tumors, initial treatment includes anticonvulsants to curb seizures. Other drugs such as anti-inflammatory agents, steroids, drugs to reduce swelling and improve blood flow are administered as are antidepressants for behavioral symptoms like anxiety and depression. The presence of seizures in a person with brain tumors can greatly complicate treatment, which is why successful treatment requires a joint effort from a team of healthcare professionals. Anti-epileptic drugs (AEDs) are the mainstay of treatment; patients are started off with a single drug (monotherapy) at the lowest dose shown to effectively control seizures. Common AEDs are valproic acid, phenytoin, and levetiracetam. If the single drug doesn’t effectively curb seizures, more drugs are added to the regimen. The ultimate outcome of therapy is to provide care that would limit seizures and unnecessary side effects and improve quality of life. Surgical management of gliomas consists of a resective surgery that encompasses the peritumoral neocortex (the area of the brain that surrounds the tumor and may be damaged).

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.

FACES is pleased to accept applications for the 2014 College Scholarship Program. FACES will provide financial support for the education of incoming freshmen or currently enrolled college students affected by epilepsy and seizure disorders. We are seeking to recognize the personal accomplishments of those living with epilepsy during their college journey. Awarded scholarship amounts will vary depending on the applicant’s financial need.

THE DEADLINE TO APPLY IS JUNE 9, 2014

Previous FACES College Scholarship recipients are not eligible to apply.

If you have any questions or would like for information about the program, please email FACESscholarship@nyumc.org or call Heather Wall, the Scholarship Coordinator, at 646.558.0839. Your message will be returned within 48 hours.

We are excited to launch the Dr. Blanca Vazquez Summer Camp Scholarship Program.

The deadline to apply is May 2, 2014

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A portion of this scholarship program has been funded by


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