The Brainstorm Series has been newly released by the Oxford University Press at the request of readers and physicians throughout the nation. We bring you here, a Foreword, written by the Chairman and Co-Founder of the Epilepsy Therapy Project, Warren Lammert. | The Editors

Foreword

For me epilepsy started nearly nine years ago with a call from my wife Kathy while I was attending an investment conference in California, 1000 miles from home. Sylvie, our 8-month-old daughter, had experienced two seizures and was in the emergency room at Children’s Hospital in Denver. I left the conference and drove through heavy Los Angeles traffic going as fast as I could in the carpool lane, narrowly making the last flight back to Denver.

I arrived at the hospital to find Sylvie in status epilepticus. Her seizure continued for some 30 minutes. As the night wore on towards morning, Kathy and I had the experience of taking our sedated Sylvie to have an MRI scan, and I later held Sylvie as they performed a lumbar puncture to rule out encephalitis.

No seizures for another month and then they started back. Medications – more seizures – new medications – then multiple medications with frightening potential side-effects – and still more seizures – seizures that would come in clusters as she woke in the morning and last 30 to 45 minutes, often requiring emergency diazepam to stop. Notwithstanding the best efforts of a dedicated, experienced neurologist and neighbor, the next year and a half brought more seizures, more medications, and visits to multiple neurologists in Denver and beyond as we sought answers to a seemingly intractable problem.

A friend recommended that we see Dr. Orrin Devinsky at the New York University Comprehensive Epilepsy Center. We checked in for what was to be a 3-4 day video EEG examination and consultation. We stayed for 14 days. We left with new medications and improved seizure control for Sylvie but not an end to her seizures. And we learned this did not only affect Sylvie. More than 30% of people living with epilepsy – more than a million men, women and children in the US alone – live with uncontrolled seizures despite the best available therapies. Many more suffer serious side-effects from their medicines.

The day-to-day challenges of living with epilepsy are significant and fall to the entire family, but my wife Kathy has been our backbone of support in meeting those challenges. And Sylvie is a happy and tenacious girl who manages to rise above her epilepsy. She is a delight and inspiration in our lives. Nevertheless, for me and our family, epilepsy has continued to be a burden and enemy for a little girl that we love, as it is for so many others.

As a father, I was not willing to accept that Sylvie would have to live with seizures. I went to Sylvie’s doctor, Orrin Devinsky, and expressed my desire to do what I could to make a difference. A partnership developed from that conversation that quickly grew to include like minded parents and professionals including, from the very early days, Steve Schachter, the lead editor of the Brainstorms series. Out of that partnership has emerged epilepsy.com (www.epilepsy.com), now the leading website for patients, families and caregivers living with epilepsy, and the Epilepsy Therapy Project (Epilepsy Therapy Project; www.epilepsytdp.org), a 501(c)(3) organization entirely focused on advancing new therapies for those living with epilepsy.

As I write this Foreword, epilepsy.com continues to evolve as a deep and trusted source of information about epilepsy and available therapies under Steve Schachter’s leadership as Editor-in-Chief. And the epilepsy.com community has exploded as an online gathering place where families and persons living with epilepsy meet to pose and answer questions and to share experiences and learning from the frontlines. This is a community we wish we could have gone to 9 years ago. We would have asked how get a 9-month old girl to swallow her then 3 different medicines, which she had to take 4 times a day, a process that alone consumed two to three tense hours of each day. And it is a place we could have learned that our fears and challenges were shared by others and that a little knowledge and support could go a long way towards giving us the energy to forge ahead. I think in this way it is a nice companion to the experience of reading this book.

The Epilepsy Therapy Project recently contributed to the creation of a new documentary that continues to air on PBS stations called “Epilepsy in Search of Available Therapies”. Research and work on new therapies provides hope for the millions of family members confronted with the difficult, unsolved challenge of epilepsy. We are fortunate to have a number of outstanding organizations working to catalyze that support in addition to Epilepsy Therapy Project, including the Epilepsy Foundation (www.epilepsyfoundation.org), FACES (www.med.nyu.edu/faces) and CURE (www.cureepilepsy.org).

But too often, persons with epilepsy and their families are not willing to speak out or put out, largely due to the stigma that is so prevalent. Today the epilepsy community as a whole lags far beyond other smaller patient communities in mobilizing resources. Only if our own community stands up and engages more aggressively to support the development of new therapies will we make the hope of new therapies a reality for our loved ones in a time frame that matters.

The Brainstorms Family: Epilepsy on our Terms is a unique and stirring compilation of stories by children with epilepsy and their family members. Like many of you, I live every day with epilepsy. Too many days include footnotes like Sylvie turning oddly to stare off towards the cash register, her right hand contracting, and a tonic/clonic seizure developing as we finished dinner at her absolutely favorite restaurant last night. But for me this book provides a beautiful window on the challenges, strengths and hopes of many other families facing similar and different realities, which is at once eye opening and inspiring. I feel this is a profoundly important collection of insights for anyone who seeks an understanding of what epilepsy means in the context of real lives or is seeking to make emotional sense of the reality of epilepsy for their own family. And I can’t imagine how anyone could read these stories and not come away with a passion to make new effective therapies a reality for the millions and millions of family members confronting epilepsy.

The challenge of working to make a difference for Sylvie and for all those living with epilepsy is a bitter sweet experience. I have been blessed to know and work with exceptional, wonderful people in this journey. In that respect, Steve Schachter with his remarkable energy and wide ranging areas of contribution to the epilepsy community, stands out as a friend and inspiration. To Steve and the other editors and contributors to this book and the entire Brainstorms series, I want to say thank you.

Warren Lammert

Lincoln, MA