April 2012

Insight: FACES Gala

The annual FACES Gala was held on Tuesday, March 6, 2012, at Chelsea Piers in Manhattan. Approximately 800 guests attended the evening. This year’s Gala was the most successful ever raising over $5.3 million dollars to support the FACES mission and epilepsy research initiatives at NYU Langone Medical Center. Jon Stewart of The Daily Show served as Master of Ceremonies. Amy Pollner Moritz was the Gala Chair. She gave a moving tribute about Dr. Orrin Devinsky and her personal story of surviving seizures. Loretta Brennan Glucksman & Leah and Michael Weisberg were the 2012 honorees. They have been loyal friends and instrumental supporters of FACES for many years. Lenore Cheeseman served as Auction Chair, which is one of largest auctions in New York. FACES is so grateful to everyone who supported the FACES Gala. Enjoy this link to view photographs of this memorable night.

Best wishes,

Brian G. Bachand
Executive Director

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2012 EPILEPSY CONFERENCE

On Sunday, May 6, 2012, FACES is pleased to invite you to attendthe Annual Epilepsy Conference that will be held at NYU Langone Medical Center. The Epilepsy Conference is open to anyone interested in learning about news on epilepsy and seizures – patients, caregivers, parents and medical professionals alike. Here is the invite and schedule of seminars to sign up for in advance. There is no cost to attend this event. Please register soon since space is limited. This year there are a few new speakers and topics that will be addressed. FACES looks forward to seeing you there!

Please register before April 27.

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LEARN TO BE YOUR OWN CHAMPION, I DID!

by Amanda Kaufman, 16

It’s more than putting one foot in front of the other, it’s more than the distance I go, and it’s more than getting the time I want. It’s about the feeling I get when I run, the rush that makes me feel as if I could run forever and never tire. I remember the best race I ever ran… to this point. It was the Division Championship and I had just finished running in the 4x800 meter relay, in which we place second in spite of the expectation that we would place first. I felt totally defeated, but I knew I had one last race to prove what I have in me: the 4x400 meter relay. I was the last leg in the relay and by the time I got the baton we were in second place and the leader was 150 meters ahead of me. I remember telling myself that I could still catch up to her. This was my time. So I ran as fast as my legs would allow and with each step I drew closer and closer. It came down to the last turn and I ran right past her and ran that straightaway like I would never run again. I had everyone screaming for me; my coaches, my teammates, and most importantly my dad. The feeling of crossing that finish line first with the best 400 time I’ve ever gotten and winning the division championships was exhilarating.

In reality, though, I didn’t need a moment in the spotlight to feel accomplished in what I do. It’s being able to do what I love most and being happy while I do it. My name is Amanda and I am sixteen years old and I live with a form of epilepsy. Having epilepsy has held me back from some things I wish I could have done like sleepovers with my best friends and staying until the end of parties. But I knew I needed the rest. When I started running Track and Field, I found myself. The condition from which I suffer will not stop me from doing what I want to. I’ve learned that if you want to do something, get up and do it. Fight for what you love to do instead of hiding behind excuses. Opportunities don’t stick around forever. If I didn’t do track I would be sitting home every day after school just doing homework and missing out on something that allows me to grow and mature in various ways.

To be completely honest, at this stage in my life, I would feel totally lost if I stopped running track. I have made so many friends, so many memories, accumulated many achievements, and most of all, I’ve learned that no matter what happens, there is always something in a person’s life that can give them the confidence to make them feel like they can do anything. For me, running track isn’t an escape. It is empowering.


THE PARENT'S PERSPECTIVE

by Candy Finkelstein, Amanda's mother

When is a good time to, “let go?” The answer from my gut would be never! But when I answer with my heart and my brain, I realize that what is best for my daughter Amanda is that which considers her as a whole individual. My concerns about her safety have been reasonably tempered by the many physical and emotional benefits of her participation on the Track team. Her excellent stamina, weight and body strength are the direct positive results of her physical training. Ever more impressive are the self-confidence and personal sense of self-worth she has developed as she has grown into this sport. Neither are things that I could have ever handed to her – she had to find them for herself and she did that with track. Do I still worry sometimes? Sure, I do, but frankly I would worry anyway, so why not let her reap all the benefits along the way! Her smile and the determination in her eyes make it all worthwhile.

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SUDEP RESEARCH - Sudden, Unexpected Death in Epilepsy (New England Journal of Medicine)

by Orrin Devinsky, MD

Epilepsy is characterized by both recurrent seizures and clinical uncertainty. Paroxysmal symptoms unpredictably punctuate life. Although most people with epilepsy live full and productive lives, doctors may too readily assure patients that seizures “never hurt the brain” and “are never fatal.” Over time, convulsive seizures can progressively impair cognition and behavior and alter brain structure. In rare cases, seizures can be fatal.

Sudden, unexpected death in epilepsy refers to a death in a patient with epilepsy that is not due to trauma, drowning, status epilepticus, or other known causes but for which there is often evidence of an associated seizure. The event may be unwitnessed, and the person is often found dead in bed. A finding of sudden, unexpected death in epilepsy is definite when clinical criteria are met and autopsy reveals no alternative cause of death, such as stroke, myocardial infarction, or drug intoxication, although there may be evidence of a seizure (e.g., a bitten tongue or pulmonary edema). Sudden, unexpected death in epilepsy is probable when clinical criteria are met but there is no autopsy, and it is possible when there is an alternative because of death or when clinical data are lacking.

Please visit the SUDEP page in Research Initiatives to continue reading Dr. Devinsky’s article on SUDEP from the New England Journal of Medicine.

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HOPE

by Erica Webster

April 2005, I was changing baby Grace's diaper and noticed blood. Our pediatrician sent us for a bone age test and a uterine sonogram.  The bone age indicated 2.5 years versus her chronological age of 15 months.  This was the first time we heard the term 'hypothalamic hamartoma' (HH.)

An MRI showed a huge HH.  We were told this was causing the precocious puberty.  We were informed seizures and behavioral problems could follow.  By the end of 2005, Grace was having daily gelastic and weekly complex partial seizures.  She was beginning to show the cognitive impact of the seizures and was spending much of her day in 'recovering mode.’

In July 2006, Grace began to have hypothalamic rages.  Onset of these rages was the turning point in making the decision to move forward with surgery.  The rages destroyed every bit of happiness within Grace and caused our family indescribable distress. Grace had surgery on April 20, 2007.  Although the surgery went well, post-op struggles continued with diabetes insipidus, uncontrollable hunger and a decreased metabolism. The good news was Grace was seizure and rage free for 2 years.

On December 11, 2011 at 2:30 am, we found Grace in her room having a seizure.  We called 911. As soon as the ambulance pulled up to the hospital, she went into cardiac arrest.  Grace passed away shortly after with Perry and I holding her hand.  We spent the day before decorating a Christmas tree.  Our last picture of Grace is her standing with her arm around her sister Sarah. 

The specific trigger to the events that early morning will never be known, although While we do not know the exact reason for why Grace went into cardiac arrest, we feel SUDEP played a role in Grace's final moments.  Grace had epilepsy, precocious puberty, rages, and suffered from depression and anxiety due to the hypothalamic hamartoma.  Grace had diabetes insipidus, lack of temperature regulation, hypothalamic obesity, and acquired Prader-Willi syndrome due to her damaged hypothalamus.  Grace was a strong spirit, but unfortunately the body she lived with was fragile.  

My husband, Perry and I helped found Hope for Hypothalamic Hamartomas (www.hopeforhh.org) to educate patients, caregivers and medical professionals about hypothalamic hamartomas. I designed the website with that sole purpose in mind. I also manage and monitor an online support forum to help families newly diagnosed, in distress, and looking for support. Grace’s passing and the impact it has had on my family has made me redouble my efforts to collaborate with other organizations like FACES to make sure that patients that suspect or are diagnosed with HH trust their instincts, advocate for their children, know which questions to ask, and get to a center of excellence like the Comprehensive Epilepsy Center NYU Langone early in the process.

We are devastated by our loss, but find comfort in knowing Grace is no longer living with daily seizures, rages, pain, and all the other struggles she was inflicted with as a result of her hypothalamic tumor.  To honor Grace’s memory, we continue to HOPE and hope you will spread the word of Grace and her courageous journey!

HOPE for Hypothalamic Hamartomas (HOPE for HH) is one of many organizations FACES partners with to promote education and patient support. Visit our Partners page to learn more.

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Look for our next edition of Insight in May, to follow the Epilepsy Conference.