Annual Newsletter 2016

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Welcome – Letter from the Founder

2016. A Year. A time of opportunity. A time to reflect.

Last year we lost two treasures of our FACES community – Oliver Sacks and Melissa Mathison. Oliver remains a daily inspiration – for all his creativity, his lessons on humanity in a medical world enveloped by technology and metrics – but mainly for the curiosity and wonder and honesty and fun he embodied.  His light was brightest when his days were few.

Melissa, famous for her screenplay of ET, was known to friends and family as a gentle soul of deep strength and an intense spirit. She knew how to create and how to love.  Poignantly, shortly after she was diagnosed with cancer, she read Oliver’s first piece in the New York Times on his imminent mortality, and she ‘lingered long’ on his words. She passed two months after Oliver.

They were kindred souls who left a legacy as wide as imagination.

2016. A future of possible.

Two of the newest and most exciting potential epilepsy therapies were pioneered with NYU/FACES leadership. FACES helped to sponsor the organizational meetings, academic conferences and partnerships – together with GW Pharmaceuticals – to move Cannabidiol, the major non-psychoactive compound in cannabis (marijuana), from anecdotal possibility to scientific evidence. After more than 2,500 years of cannabis to treat epilepsy, we finally have evidence that one of its major compounds really helps to reduce seizures in children with Dravet Syndrome. At the same time, NYU/FACES investigators helped to lead the study that proved that everolimus, a drug that reverses the metabolic abnormality in tuberous sclerosis complex, reduces seizures in patients with this disorder.

Two of the most innovative epilepsy therapies in the past decade.

We remain committed to pushing the envelope harder. The first ever genetic trial in epilepsy. Ataluren, a drug that can increase expression of normal proteins in patients with specific genetic mutations (stop codons), will be tested in patients with Dravet Syndrome and CDKL5, rare but devastating genetic epilepsies.  Neuroinflammation remains a burning topic in epilepsy and NYU/FACES is actively collaborating with international colleagues on exploring new therapies and diagnostic tools.

The Human Epilepsy Project– the largest collaboration ever focused on patients with focal epilepsy – will help us to understand why some patients have epilepsy which is easily controlled and others face ongoing seizures despite disabling medication burdens.

Sudden Death in Epilepsy– SUDEP – remains an area where FACES has organized the world’s largest registry as well as a study that spans more than 25 epilepsy centers across 15 countries. We spearheaded the first collaboration of the epilepsy, medical examiner and epidemiology (Centers for Disease Control) communities to standardize how we approach epilepsy-related mortality.  FACES is also leading the efforts in Sudden Unexplained Death in Childhood (SUDC), which claims the lives of 400 toddlers per year, a third of whom have febrile seizures.

Yet the most tangible rewards are individual patients and families. Game Day, the Parent Network, our Educational Conference, Camp Scholarships and College Scholarships help improve the lives of so many. Clinical care – finding the best therapies and the safest and more successful path forward – remains our core.

2016. Like so many other years, we should celebrate our accomplishments, but then reflect on the terrible reality that for so many, epilepsy remains an unpredictable and disabling disease with too many problems – from memory loss to depression to death – that remain far too common.

We will – with your help – continue to rudder the future towards a safer and sweeter world for people with epilepsy.

Orrin Devinsky, MD

founder