Old Friends, New Research, and How to See Around Corners

Hi Everyone –

Lots of exciting things are happening in the KCNQ2 community in cities and towns all over the world and I’ll keep you posted through this blog. Today’s news comes direct from the Big Apple.

Dr Orrin Devinsky has joined the Scientific Advisory Board of the KCNQ2 Cure Alliance. Dr Devinsky is professor of Neurology, Neurosurgery, and Psychiatry at NYU School of Medicine. He directs the NYU Comprehensive Epilepsy Center and is a world leader in epilepsy research. For additional details about his wide-ranging efforts please see the SAB section of this website.

Dr Devinsky really understands how hard it can be for families with kids who have epilepsy. That’s one reason he founded FACES, which stands for Finding A Cure for Epilepsy and Seizures. FACES funds research to improve epilepsy care, advance new therapies, and support families. We appreciate all his efforts and are thrilled Dr Devinsky has joined our team of experts. These scientific superstars will help us identify the most promising research to fund as we search for treatment — and ultimately a cure — for this rare and devastating form of epilepsy.

On a personal note, I’ve known Orrin for 15 years. We met in New York City when I was based there for NBC. My then Dateline colleague Stone Phillips asked if I would MC a FACES gala for his friend Orrin Devinsky. Back then I had no personal connection to epilepsy and didn’t know much about it.

That turned out to be one of the most inspiring evenings of my life. One girl’s story really struck me. Her type of epilepsy was so severe she’d needed a hemispherectomy. The radical surgery stopped her seizures but left her with only one functioning hemisphere of the brain. But “neuroplasticity” is remarkable, and she spoke eloquently about how thrilled she was with the operation and her new life. Then she thanked Dr Devinsky in glowing terms.

KCNQ2 is a different kind of epilepsy with different kinds of challenges. But I mention that night because I know changes are possible. 2001 seems a long time ago now. We live in an era of pioneering research, at the cusp of new discoveries and treatments.

Our Scientific Advisory Board will help us see around corners, peer into the future, figure out what we need to do next. When families like ours get to partner with the best and brightest in science and medicine, great things can happen.

Sara James