December 2015 / January 2016

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DECEMBER 2015 / JANUARY 2016 FACES E-NEWSLETTER

  1. OBITUARY NOTICE FOR MELISSA MATHISON
  2. RECIPE OF THE MONTH
  3. THE PARENT NETWORK INTERVIEW
  4. MEET DAVID FERRELL
  5. TIM’S JOURNEY
  6. PANAMA EPILEPSY PROJECT
  7. ANTIGUA MISSION
  8. HIGH-FREQUENCY OSCILLATIONS (HFOS) IN EPILEPSY
  9. MIA’S HONOR ROLE
  10. NOTEWORTHY NEWS

SEASONS GREETINGS FROM OUR STAFF

Dear Friends of FACES,

Please enjoy this holiday edition of the Insight E-Newsletter, which combines the December and January issues. We are so excited about our accomplishments this past year. FACES held 6 well-attended Peace of Mind lectures that can be viewed on our website – Neuropsychological Evaluations, Recent Advances in the Genetics of Epilepsy, Nutrition and Epilepsy, Pills and Your Brain, Life Planning for Patients and Caregivers Living with Epilepsy, and Autism and Epilepsy. Several others are planned for 2016. FACES hosted our third annual Teen Event at the American Museum of Natural History; gave away $30,000 to eligible students who applied for the FACES College Scholarship Program; $26,000 to eligible children who applied to the Dr. Blanca Vasquez Summer Camp Scholarship Program; participated in the New York City TCS Marathon for the third time with 12 runners raising almost $80,000 and 5 runners who participated in the New York City Half Marathon, raising over $25,000. We worked with our Steering Committee to create the 2nd Annual FreshFACES Cocktail Party at Espace, raising over $150,000; had a fun-filled and well attended Game Day; held an educational and informative Epilepsy Conference; increased our Facebook “likes” to well over 10,000, and created an amazing Game Day video. In addition, the FACES Gala raised over $4.9 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) OBITUARY NOTICE FOR MELISSA MATHISON

From left to right: Georgia Ford,
Seth Meyers and Melissa Mathison
at the FACES Gala 2013

It is with great sadness that we share with you the loss of FACES board member, Melissa Mathison. Melissa was a remarkable woman. She was a celebrated screenwriter who was nominated for an Academy Award for E.T. the Extra-Terrestrial in 1982, yet her greatest accomplishment was as a mother to Georgia and Malcolm. Melissa served as the FACES Gala Chair in 2010. She was beloved by so many, from her friend, the Dalai Lama, to many of us. We will miss her tremendously.

 

 

 

 

2) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

As the weather gets cold, here is a soup recipe that will keep you warm. Soups are a great way to introduce vegetables to children who are not accustomed to eating them since they are more mellow tasting after simmering in broth. A pinch of a dried herb may be added for flavor such as thyme or sage. If you are preparing steamed fresh vegetables for other meals, remember to freeze the extras for soup that you will make in the future. Similarly, you can freeze small portions of roasted meat or poultry too.

CHICKEN VEGETABLE SOUP

Ingredients:

  • Butter, olive or other oils
  • Raw vegetables finely chopped such as celery, broccoli, spinach, onions, carrots, cauliflower, green beans, squash, peppers (use at least 2 or more)
  • Chicken dark meat - no skin - cooked - finely chopped
  • Broth, Swanson Chicken 99% fat-free- canned
  • Optional: salt and pepper
  • Additonal ingredients that may be added: Shiratake Miracle Noodles, cream, cheese (after step 5)

Directions:

  1. Place butter or oil in small saucepan and heat until just beginning to sizzle.
  2. Add chopped fresh vegetables and sauté for 2 minutes stirring frequently.
  3. Add chopped chicken (or other meat) and continue sautéing to allow fat to absorb for about 1 minute.
  4. Pour in the broth then stir occasionally.
  5. Add a pinch of salt, pepper and a dried herb if desired such as thyme, sage or basil.
  6. Reduce heat and simmer for 5-10 minutes on low heat.

This recipe has been provided from The Charlie Foundation

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.

3) THE PARENT NETWORK INTERVIEW

"The Parent Network is a place where you don't have to explain what you are going through, they just get it"

-Jeanne Garske

The FACES Parent Network is designed to connect parents with parent mentors that have experienced similar issues when dealing with a child/ and or adult who suffers from a chronic illness.

Whether it’s the hospitalization process, educational services or social support resources, the added benefit of speaking to another parent that has lived through the epilepsy experience can be quite valuable.

In 2007, NYU Langone Medical Center recreational therapist, Peggy Guinnessy was approached by Dr. Orrin Devinsky to create the very first group. It has continued to thrive under Peggy’s leadership and the generous time and dedication of amazing volunteer parents.

Pamela Mohr, FACES executive director and Heather Krol, administrative coordinator sat down with creator Peggy Guinnessy and Jeanne Garske, one of the long-time volunteer parent mentors to learn more about the program.

QUESTIONS TO PEGGY:

What is your role here with FACES/NYU Langone Comprehensive Epilepsy Center?
I am the Parent Network Coordinator which entails training support parents and connecting them to share each other’s experiences.

When and how was the FACES Parent Network born?
Starting 1998, I worked as a recreational therapist at NYULMC. In 2007, Dr. Devinsky asked if I would be interested in training parents for a support group. I knew some parents already from the pediatric subcommittee and he also gave me a few names. I then formed my first group.

How does the Parent Network help parents/guardians cope with a child who has epilepsy?
I think that parents are the biggest advocates for their children. When it comes to school, surgery, medicine, etc., parents provide the most up to date resources and support. They gain this from the Parent Network Program.

How many families have you connected through this program since inception?
I have introduced hundreds of families mostly through FACES events, which have grown throughout the years. I have also introduced them at hospital bedside visits.

How would you like to see the Parent Network program grow?
I would like to have more dads involved. More fathers are getting involved slowly. I would eventually like to have a sibling panel in the works for the future. More general family involvement would be great.

QUESTIONS TO JEANNE:

How did you first hear about the Parent Network?
I learned about it from Peggy when she started it. She approached me while my son, Chris was receiving treatment on the unit. Peggy got me intrigued because I was interested in learning about private areas to shower, do personal hygiene, etc while on the unit. I was also on the pediatric subcommittee which was mostly epilepsy patients and Peggy ran it.

What made you want to participate in this program?
When I was in a support group on Long Island (parent support group of the Epilepsy Foundation (EF), I got so much information from other parents. Getting information from those who are in the same situation helps so much. No one has the information unless you’ve gone out and looked for it.

How did your first experience go connecting with another parent?
The first lasted 1 hour. I get as much out of it as the parent gives. It’s priceless because no one knows how bad epilepsy can be. Even if you have a great ending, you need information,(as little as local takeout restaurants near the hospital to visiting doctors). I extended myself to that parent.

If you could give one word of advice to parents/guardians who face the challenges of epilepsy with their child, what would it be?
To not give up and to always remember YOU ARE THEIR ADVOCATE. You can’t expect to get the answers instantly and you always have to search for them. Things happen to everyone. Always remember to be strong and educate yourself.

Has the Parent Network given you help and hope during challenging times?
When you talk to other parents of children in this situation, it just makes you realize that the world is full of tough things. Everyone has something they deal with. It’s just what life is and that helps me. In my situation, I realize things with Chris could be much worse and it makes me feel better talking to others. The Parent Network is a place where you don’t have to explain what you are going through, they just get it.

What do you think makes the Parent Network stand out from other epilepsy support groups?
Peggy, being the moderator. The point is you have a one-to-one with someone in your situation and it’s in a private setting. Peggy is great at matching up a pair she knows well. A social meeting brings all parents together and keeps everyone in touch with their child.

Peggy says- All the events that FACES hosts brings the community together. You continue the relationship through being involved. We have plenty of opportunities for everyone to connect.

Is their one situation that stands out to you where you really made a difference in helping another parent?
I can’t think of one. Every phone call you end with, you feel like you’ve made a difference. There is one parent I now talk to on a “general basis” and she has become my friend. We go places together and give each other hope and strength with our situations.

4) MEET DAVID FERRELL

Living in Middletown, NJ with two teenage boys, married to the love of my life, Colleen, and having a fantastic career as a financial advisor, I have been truly blessed in my life. Our 13 year old son, Luke is a very bright and a social young man who loves music. He plays the trumpet in his own jazz band and “heads up” the technology team at his school. Our 18 year son, Blake, was born with a rare genetic condition, a deletion of the STXBP1 gene. While this condition has left Blake both physically and cognitively impaired, his intractable seizures have been the most difficult to deal with. Blake has had seizures his entire life and at nine years old, he was having 100-150 seizures a month. When Blake was 13, we began to see Dr. Bojko at the St. Barnabas Institute of Neurology Neurosurgery and Dr. Orrin Devinsky at NYU Langone Comprehensive Epilepsy Center. Blake’s seizures have been greatly reduced and he can now enjoy many things he was never able to do. In fact, I now take Blake with me when I participate in marathons and triathlons. Even though Blake uses my body to get him through the races, it would not be possible without the treatment he has received from the gifted physicians and clinicians we take him to for treatment. I got involved with FACES to help continue their mission in finding a cure with hopes that Blake and I can be part of TeamFACES. Through my career as a financial advisor and being part of the special needs community, I found a need to provide planning information to families that have a special needs child or family member. The following information should be considered when planning for the future of a special needs child.

WHY IS ESTATE PLANNING IMPORTANT WHEN YOU HAVE A CHILD WITH SPECIAL NEEDS?:

Preparing for the day when you won't be around to care for your family is a challenge that all parents face. As a parent of a child with special needs, your estate planning needs are complex. Your will, and other estate planning documents you prepare, must address your unique concerns.

These concerns may include:

  • Providing for adequate lifetime care or assistance
  • Appointing someone to manage your adult child's finances
  • Maintaining your child's eligibility for government benefits
  • Avoiding family conflicts

An attorney and other financial professionals experienced in planning for children with special needs can help you draft a comprehensive estate plan to ensure that your child is well provided for after your death. If you already have an estate plan in place, you should have all existing legal documents reviewed (and revised, if necessary) to make sure they address your family's needs.

WILLS:
A will is the cornerstone of any estate plan. It ensures that your money and property are distributed according to your wishes upon your death, and allows you to select a guardian for your child. Without a will, probate assets will pass according to the laws of intestacy, which generally assign a portion of the assets to the surviving spouse and a portion to the children. If your child requires more financial resources than other beneficiaries, it's especially important to prepare a will that reflects your wishes.

TRUSTS:
A trust is a legal entity that enables you to leave assets to your child with special needs (and others) outside of your will. You can create a trust during your lifetime (a living trust) or in your will (a testamentary trust). As the creator of a trust, you can decide what assets will be transferred to the trust, who the beneficiaries will be, what the terms and conditions of the trust will be, and who will manage the trust. Trusts are typically used to:

  • Avoid probate
  • Manage assets
  • Provide for minor children
  • Avoid estate taxes
  • Protect assets from creditors

One type of trust, called a special needs trust, can play an important role in your estate plan. Specifically designed for the benefit of individuals with special needs, a special needs trust can allow you to provide for your child without jeopardizing his or her eligibility for government benefits, an advantage not offered by traditional trusts.

WHY USE A SPECIAL NEEDS TRUST?:
Government benefits, such as Medicaid and Supplemental Security Income (SSI), can be vital sources of support for your child with special needs, especially if he or she is unable to buy or afford private health insurance. But because these government programs are need-based, your child will become ineligible for benefits if his or her countable assets (e.g., cash and other liquid assets) exceed $2,000, the limit that applies in most states. An inheritance, a gift from a relative, or a personal injury award may push your child's assets over the limit, resulting in the loss of government support. Unfortunately, government benefits generally provide only basic support. The portion of assets your child is allowed to keep and the small allowance for personal care he or she receives under government benefit eligibility rules may not be enough to pay for necessary items and services, such as eyeglasses and dental care. It is almost certainly not enough to allow the chil"luxuries" such as vacations or gifts for others. If you want to provide funds that can be used for expenses not covered by government benefits while preserving your child's eligibility for those benefits, consider establishing a special needs trust. Because assets deposited into, and income generated by, a properly drafted special needs trust will not be considered "available" to your child, they won't jeopardize his or her eligibility for Medicaid and SSI. In addition, establishing a special needs trust is often the best way to guarantee that funds you leave are used for your child's benefit. Although disinheriting your child or leaving money to other family members on his or her behalf may initially preserve your child's eligibility for government benefits, your child may someday be left without adequate support if these benefits are reduced or eliminated. Another concern is that creditors may attach money left to a family member if, for instance, that family member is held liable for an auto accident or declares bankruptcy. If you are interested in establishing a special needs trust, consult an attorney who is experienced in special needs issues (including Medicaid planning), and the laws governing special needs trusts in your state.

LETTER OF INTENT:
A letter of intent is a document that describes how you want your child to be cared for after you're gone. Although it's not a legal document, it can provide important information to guardians, trustees, family members, and others involved in the care of your child. The letter may address such issues as your child's medical needs, daily routine, interests, likes and dislikes, religious practices, living arrangements, social activities, behavior management, and degree of self-sufficiency. Such a letter can prove invaluable to your child's caregivers after you're gone, and can also make the transition to a new living situation as smooth as possible for your child.

BENEFICIARY DESIGNATIONS:
With certain assets (such as life insurance policies, retirement plans, and annuities), you must designate beneficiaries and/or contingent beneficiaries. You'll also name beneficiaries under your will. Although your first inclination might be to name your child with special needs outright as your beneficiary, such a designation could jeopardize his or her entitlement to government benefits instead, consider establishing a special needs trust for your child and designating the trust as your beneficiary.

GUARDIAN DEFINED:
A guardian is someone with the legal power to care for another person and manage that person's personal and/or financial affairs. A guardian can advise your child, manage assets, and oversee your child's care after your death. Generally, you'll nominate a guardian, along with several contingent guardians, in your will. The court has final approval, but it will usually approve whomever you nominate, unless there are compelling reasons not to do so.

What to consider when choosing a guardian
You may want to select a relative, friend, or trusted legal professional as the guardian for your child. Here are some points to consider as you make your decision:

  • Does the potential guardian live close to your child?
  • Does he or she have enough time to devote to your child?
  • Does he or she have the interpersonal skills necessary to be an effective advocate for your child?
  • Is he or she willing to take on the responsibility?
  • Do you trust him or her to keep your child's best interests in mind?
  • Does he or she already have a relationship with your child?
  • Is he or she willing to keep up with new programs and opportunities for your child?
  • Will he or she adapt to your child's changing circumstances?
  • Does he or she have the financial ability to manage your child's estate?

GUARDIANSHIP ISSUES:
Although you are the natural guardian of your child with special needs during your lifetime, who will care for your child after your death? Selecting a guardian who can act on your child's behalf after you die is one of the most important decisions you face. The person you choose must be able to handle the complex financial, legal, and personal needs your child may have. Depending on your child's needs, you may also need to choose a person who is committed to serving as guardian even after your child reaches adulthood. The law doesn't assume that an adult with special needs is incapable of handling his or her affairs. After reaching the age of majority (generally age 18), your child is a legal adult. He or she will be judged capable of handling his or her own affairs unless declared incapable by a court. If such a determination is necessary, the guardian you choose now may need to serve as guardian throughout your child's life.

FACES would like to thank David Ferrell for this useful advice. If you have further questions, we encourage you to reach out to your financial planner for assistance.

5) TIM’S JOURNEY

In March 2010, our daughter Halle was born with Tuberous Sclerosis Complex (TSC). We knew nothing about this genetic disorder, but through research and referrals we quickly found our way to Dr. Orrin Devinsky at NYU. He immediately provided the medical care our daughter needed so badly. He was a reassuring voice that helped keep us focused on the solutions and not the problems. By the age of five months, Halle was seizing as many as 30 times a day and spent much of the next six months in the hospital. However, it was not until Dr. Howard Weiner at NYU Langone Medical Center, removed a problematic tuber in her brain at 11 months of age and she became seizure free. Although her seizures were no longer a daily concern, the experience has stayed in the back of our minds ever since.

About 18 months ago, I decided to get back to running again. Running used to be my primary form of exercise but in recent years had gotten away from it. In the summer of 2014, I bought a new pair of sneakers and got back on a schedule. A few months later my wife Laurie told me about a woman who was training to run the 2014 NYC Marathon to raise money for FACES. Knowing I once had a goal of running a marathon, Laurie suggested that I volunteer to run it for FACES in 2015. A week before the 2014 race our family attended FACES Game Day at Chelsea Piers. Then and there, I committed to Dr. Devinsky, the FACES team, and myself that I would run the marathon the next year. Much of the motivation came from a sense of gratitude for what Dr. Devinsky and the FACES team had done for our daughter and our family. What I did not know was how grateful I would be to my wife 53 weeks later for her encouragement and continued support.

Immediately, I researched training for the marathon and started on a plan that would put me in a good position when the real training began sometime late the following spring. Since moving into the city in 1996, I had typically run on treadmills during the winter months. Training for the marathon, I felt I needed to run on pavement to prepare my body for 26.2 miles through the streets of New York City. Although it was difficult at times, I ultimately enjoyed my winter runs in the Park, regardless of the sub-freezing temperatures and all the snow. In May, FACES hired Elizabeth Azze, an ultra-marathoner and an experienced marathon trainer, to help prepare a group of 10 of us for the marathon. Elizabeth put each of us on a customized schedule, slowly building up our mileage and increasing our ‘long-run’ distances. Two or three times each week I would get up at 5am to get my runs in before I went to work. Although it was difficult, I felt extremely motivated and committed to my training and ultimately enjoyed how I felt as a result. I had my share of aches and pains in my calves, Achilles, and ankles, but Elizabeth, Laurie and other friends who had marathon training experience helped me realize that the mental preparation was equally as important as the physical.

Towards the end of the summer, I reached out to dozens of friends and family members to donate to FACES and by October I had reached my goal. Three weeks before the race I was unable to complete the last long run as my ankle began to tighten. Elizabeth suggested I back off because I was running well and it was not worth pushing it further and risk injuring myself so close to the race. As a result, I spent more time icing my ankles and Achilles than running the next few weeks so I would be as healthy as possible on November 1st.

As race day approached, the reality of what I had been training for the last 12 months started to sink in. I was both excited and anxious and tried to focus on how much work I put in to prepare for the day. I sensed that my wife was also looking forward to the day. Yes, she was the driving force behind my decision to run, but she also had made numerous sacrifices to allow me the time to train. The night before the race was Halloween. I knew I needed a good night’s rest so instead of trick or treating with the kids, I stayed home and got to bed early. The next morning I was up at 6am and headed out for my two hour trek via subway, Staten Island Ferry and bus to the starting area at Fort Wadsworth Park on Staten Island. It was there I met up with a few of my teammates I had trained with most the last few months and we were able to start in the same group.

Most of the first 10 miles were much like our training runs; we stayed together in a group and ran at a very comfortable pace. The crowds in Brooklyn were amazing, lining the streets and cheering for their friends, family and everyone else. By the time we crossed over into Queens we were about half way through the race. It was around there that my teammates and I got separated. This was not as much of a concern as were the hills and the warm temperatures. I slowed my pace and set my focus on getting over the Queensboro Bridge into Manhattan and finding Laurie, Halle, and our son, Zach who were waiting for me on 1st Avenue and 83rd Street. By the time I reached my family I was beyond happy to stop and see them. I was 17.5 miles into the race and their excitement provided an extra boost.

I continued north towards The Bronx and then circled back down into Manhattan on 5th Avenue. This stretch of about four or five miles was the most difficult. I had to walk a couple of times to get water at the hydration stations and relax my muscles a bit. The challenge presented by the hill on 5th Avenue from 120th Street down to 90th before the final stretch is well known to marathoners. I was determined to not let it defeat me so I tried to keep a steady pace. It was here that I got another boost when Elizabeth jumped out of the crowd and ran next to me for a block or two providing encouragement and support. When I made it into the park I could finally picture the finish. I had run this section of the park loop too many times to count and I focused on how I wanted to finish with my hands reaching high in the air in victory. Still, I had run more than 24 miles over the last four hours, by far more than ever before and I had intermittent feelings of joy and pain as I ran. Just as I had gotten a boost from them earlier, my wife and kids surprised me by greeting me along the road somewhere in my 25th mile. I had not expected to see them again but they wanted to see me one more time before the finish. It was just what I needed.

Spurred on by their support, I pushed forward and completed the race in 4:44. Later, Laurie pointed out that my time matched with my age, 44. I spent almost an hour after the race collecting my medal and re-fueling my body. Although I was exhausted, I was exhilarated to see my kids as they jumped at me. Zach hugged me with a sense of pride I still cherish. Halle, although not as aware of what I had done, also hugged me and I was warmed by her embrace as I told her I ran it for her and would explain to her someday when she could better understand. The smile on Laurie’s face topped it all off. I felt her love and admiration as she congratulated me with a kiss and a hug. At that point it was all worth it; the hours of training and the time spent apart from my family. I had accomplished a personal goal with the help of those who love me and was able to raise more than $12,000 for an organization that has given so much to our family.

6) PANAMA EPILEPSY PROJECT

By: Ruben Kuzniecky, MD

On October 12, 2015, Drs. Ruben Kuzniecky, Howard Weiner, Yvonne Zelenka and EEG technologist Ameeta Grover spent a week at the Hospital del Nino, in Panama. This is the third of such trips by the NYU team to treat, operate and educate patients with epilepsy at this facility in Panama.

This program was made possible through the President of Panama and the National Lottery of Panama that gave the funds for the equipment and personnel that participated in this project.

Prior to surgery, the patients were seen by Dr. Kuzniecky and had discussions with Dr. Weiner and the Panama team, which is similar to what we do at NYU Langone Comprehensive Epilepsy Center.

All of the patients that ranged from age 6 months to 16 years were admitted to the hospital several days prior to surgery because many of them live at a distance and had difficulty getting into Panama City. More importantly, the patients often do not have medications or adequate nutrition and some have other diseases so admitting them a few days earlier helps with surgical planning.

This year we selected 6 patients who underwent different types of epilepsy surgeries including 2 patients who underwent implementation of intracranial EEG electrodes. In total, the team operated on 6 patients and did 8 epilepsy surgeries in 4 days. All patients did exceptionally well leaving the hospital a few days after our departure.

HIGHLIGHTS

Team:

The NYU team consisted of Dr. Weiner and a neurosurgery resident who assisted him during his operations. Unfortunately, the resident assigned this year had to change plans due to a family emergency at the last minute and Dr. Weiner was left to do the surgeries on his own. However he was assisted by Dr. Aranda, Chief of Neurosurgery at the Hospital de Niños of Panama. Dr. Aranda spent the entire week with Dr. Weiner doing epilepsy surgeries and both worked extremely well as a team.

Another important consideration is that the same team of anesthesiologists and ICU personal have worked with us for the past 2 years. This fact made the trip much easier as many of the peri-operative details are routine by now.

Surgeries:

As described above, the team operated on 6 patients. 2 of the patients had 2 operations totaling 8 surgeries in 4 days. The cases included an unusual parietal lobe tumor, a child with Tuberous Sclerosis, a boy with frontal lobe epilepsy, two hemispherectomies in young infants and a young female with mesial temporal sclerosis. For the first time in Panama, cortical stimulation and brain mapping after implantation of grid electrodes was done. The stimulation was attended by a large group of residents and students as this was the first attempt at doing this in Panama.

 

Challenges:

As with any small developing country the infrastructure in the hospital and in the outpatient facility is limited. More importantly the educational level and understanding by many of the parents of their children’s medical and psychological condition is limited. We devoted a fair amount of time educating the parents while they were in the hospital about the importance of medications and seizure triggers. For example many of the patients who receive surgery are unable to take medication on a regular basis because the parents are not able to afford it. This represents one of the main problems in dealing with epilepsy in developing countries. In addition, the stigma associated with epilepsy remains a big social barrier in Panama as in many other developing countries. Finally, knowledge about epilepsy for both teachers and parents is relatively low.

Fundacion LUCES (LUCES Foundation):

During our 2014 epilepsy surgery program, we operated on a young boy who had epilepsy from a benign temporal lobe tumor. After a successful surgery, the mother was sad and she cried. She was not crying of happiness but to the fact that she had no money to pay for the child’s medicines nor had she any money to go back home. I was unsettled by my encounter with this mother and after discussions with Dr. Carmen Baez, Director of Pediatric Neurology at the hospital we decided to create LUCES, a non-profit foundation dedicated to improving the life of patients and families with epilepsy in Panama akin to what FACES does here in New York. After the usual legal proceedings, we were able to launch this foundation at the beginning of 2015 and formally in August 2015. Since then, the foundation has been able to raise funds for a number of events, launched a website and was recently highlighted in the Panama press during surgery week.

As mentioned above, one of the major problems in developing countries is accessibility to medications and low levels of education of the population and patients. LUCES has established an emergency medication bank which has donated over $10,000 in antiepileptic medications for patients this year. In addition, LUCES is funding a part-time nurse that educates patients and families on epilepsy. On October 16, 2015, LUCES also organized the first family and patient epilepsy day in Panama. About 100 kids and parents attended a wonderful event . Another family event is planned for January 2016 and a fundraising gala is planned for October 2016. The needs are large as we estimate that over 300 patients at the hospital clinic are not able to afford medication. LUCES has created a “Sponsor a Child Medication program” and hopes to be able to cover the medication cost for all the children CLICK HERE TO LEARN MORE.

 

 

A Model for Small developing Countries:

Although epilepsy is a common neurological disorder, epilepsy surgery is complex and available in developed countries or large developing countries. Panama has a small population of 3.5 million people and the medical care in specialties is relatively adequate. However, a small country like Panama with less than 10 neurologists, and none trained with a subspecialty in epilepsy is unable to have the critical mass needed for an epilepsy surgery program nor can afford the infrastructure for an epilepsy surgery program. Thus, a model such as the one established between the NYU Langone team and the Hospital del Nino, in Panama seems like an excellent intermediate step for epilepsy surgery. Since 2013 when we initiated the first trip, we have operated on 21 patients with excellent results. Although this model limits the number of patients treated so far, the total cost of all the surgeries is less than the cost of one epilepsy surgery in the US. With increased funding, this high level surgical care can be expanded while the infrastructure and educational needs are improved. Eventually, it will be time for Panama to start their own epilepsy program.

ENJOY SOME MORE PHOTOS

7) Antigua Mission

FACES has received a gift from the Francis Archibald Wentworth Walter Fund for Medical Aide to the Islands of Antigua and Barbuda at the Tides Foundation to send doctors and nurses from the NYU Langone Comprehensive Epilepsy Center (CEC) to the island of Antigua to train medical staff and provide care to pediatric patients with epilepsy. The Tides Foundation's fund honors Antiguan artist Frank Walter, and Jackley Peters, Attache to Ambassaor Webson.

This gift provided funding to send two epileptologists–Dr. Derek Chong and Dr. Judith Bluvstein - one epilepsy nurse practitioner-Nidia Ortiz and one EEG technologist – Ameeta Grover - to the island to run a 4-day epilepsy clinic to evaluate and care for children and adults on the island with epilepsy. As Antigua is lacking a neurologist, this gift is particularly important to the citizens there.

 

EPILEPSY WEEK– NOVEMBER 9-13, 2015
By: Derek Chong

When Dr. Orrin Devinsky was asked if FACES would help a small nation’s fight against epilepsy, the answer was quite simple: “of course”. Antigua is an island in the West Indies with a population of about 90,000, and the smaller island of Barbuda has about 3,000. Neither island has a neurologist or neurosurgeon. Through Barbara Paca, PhD and the Francis Archibald Wentworth Walter Fund for Medical Aide to the Islands of Antigua and Barbuda at the Tides Foundation, a grant was made to the NYU Langone Comprehensive Epilepsy Center to provide much needed assistance on this island.

Our exciting adventure began about 1 year ago, when Pamela Mohr, the FACES Executive Directors and I met with Barbara, and the United Nations ambassador to Antigua & Barbuda, Dr. Walton A Webson. Ambassador Webson is living out the motto of ‘emphasizing ability not disability’, as he is blind, yet has achieved so much. One of his major focus points is on the stigma of epilepsy, and how it prevents people from visiting the doctor, sometimes for fear of rejection from family and friends, and sometimes for fear of losing driving privileges. The mission’s goal was to both diagnose and treat as many patients as possible, but also dispel untruths and stigmas.

The World Health Organization is leading a campaign termed ‘Epilepsy: Out of the Shadows’, which emphasizes the fact that epilepsy is treatable and often completely controllable. Our goal for this mission was to raise public awareness, allow people to come forward, train doctors and nurses on the basics of epilepsy care, and also see patients at Mount St. John’s Medical Center and community based clinics for treatment and EEG monitoring.

Until 2012, the only available epilepsy medications in Antigua and Barbuda included phenobarbital, phenytoin, carbamazepine and valproic acid. Dr. David Clark, an Antiguan-born pediatric epilepsy specialist practicing at Dell’s Children Hospital in Austin, TX and current president of the Epilepsy Society of the Caribbean, has been travelling back to his home country several times a year to help with epilepsy care and has been responsible for some significant advances. Along with our own Dr. Jacqueline French, they chose 3 newer medications for their government to cover: lamotrigine, levetiracetam and topiramate. The issue remains that local physicians need to learn how to use these medications, and for pharmacies to actually start ordering them.

I saw adult patients, and wrote long notes back to their referring doctors, explaining the rationale for making medication changes, and how we should start and continue these newer medications. Many of these patients never had an EEG before and our own Ameeta Grover provided a diagnosis, or allowed us to make a decision on safe driving.

This country and many others just south of us have no neurologists, no EEG machines, and no modern training on epilepsy treatment. We were all quite busy there, spending the daytime hours seeing patients and doing EEGs, sometimes sweating in hot rooms without air conditioning, and the evening hours preparing and giving talks for the community and professionals of Antigua and Barbuda. It was truly an amazing experience that allowed me to reflect on what we have here, but realize that despite all we have, the big picture is no different at all. We really need to change the world perception, no matter where in the world we are. We need to modernize public policy and coverage, and we must make it easier for people to step forward for the best care possible. It is very true that we are Finding A Cure for Epilepsy and Seizures, but one hurdle is stigma, and that is something we need to change in everyone’s brain.

ENJOY SOME PHOTOS!

8) HIGH-FREQUENCY OSCILLATIONS (HFOS) IN EPILEPSY

By: Sloka Iyengar, PhD.

Figure – EEG from a person with epilepsy
shows the ‘raw’ (unfiltered) trace
followed by what remains after filtering
the low-frequency oscillations (2 and 3).

Zijlmans et al., 2012 (Ann Neurology)

Single neurons and neuronal circuits (clusters of neurons) can give rise to ‘oscillations’ which is rhythmic activity similar to that of a heartbeat. It is possible, albeit difficult to study the oscillatory activity of single neurons; hence scientists usually study oscillatory activity neuronal circuits by using electroencephalography (EEG). Oscillations are measured in units of Hertz (Hz) and are specific for certain functions. For example, alpha waves (8-13 Hz) are observed when the person is in a state of relaxed wakefulness with eyes closed. Other frequencies are delta (1–4 Hz), theta (4–8 Hz), beta (13–30 Hz) and gamma (30–70 Hz). Oscillations are a reflection of the neuronal activity of the individual e.g. wakefulness, sleep and cognitive processing. In the recent past, high frequency oscillations (HFOs; see figure) and their importance for normal brain functions and for neurological disorders like epilepsy have been described. The hippocampus is the part of the brain where scientists focus their efforts to study HFOs because of the unique assembly of neurons in the hippocampus and its role in seizures and associated comorbidites. HFOs in the range of 80 Hz and above have been suggested to be important in epilepsy for the following reasons: To guide epilepsy surgery - in some patients where imaging techniques do not yield a clear demarcation of the epileptogenic brain tissue, HFOs may be a marker that can guide removal of tissue. A study showed that removal of the HFO-generating brain tissue was linked with better outcome.

An absence of HFOs may mean that seizures are originating not from one specific place in the brain but from multiple areas and that the patient may not be a good candidate for surgery.

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

9) MIA’S HONOR ROLL

By: Amy Dillon King

Mia achieved the Charlotte Mecklenburg School Honor Roll for the first quarter of sixth grade at McClintock Middle School in Charlotte, North Carolina. This means that she earned A’s and B’s and only one C in all her classes which included Science, Language, Physical Education, Math and Art. Mia works extremely hard both at school and for hours each evening at home to complete her work and meet the expectations of her teachers. Even with a four day hospitalization during this quarter, she worked hard to catch up and managed to keep her grades up. We are all (including Mia) extraordinarily proud of this achievement just four and a half years after brain surgery to reduce her seizure activity.

 

10) NOTEWORTHY NEWS

Top 10 National Press Articles

1) Boy Dances on Denver Streets for a Very Special Cause

2) Pharma Company Under Fire for Extreme Price Hike on Anti-Seizure Drug

3) A New Study Claims Coffee Could Prevent Premature Death

4) Helping Your Roomate Live with Epilepsy

5) A Good Night’s Sleep is About More Than Comfort

6) People with epilepsy live full and safe lives

7) Genes May Play Greater Role in Focal Epilepsy than Previously Thought

8) Epilepsy sleep study finds sleep deprivation is a trigger for epileptic seizures

9) Infants Who Develop Whooping Cough May Be At Higher Risk Of Epilepsy As They Get Older

10) Victory - Congress Passes Bill to Remove Barriers to New Treatments

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