Warren Lammert, Chairman and Co-Founder of The Epilepsy Therapy Project, was honored by Finding a Cure for Epilepsy and Seizures (FACES) on Monday, March 5, 2007 at their Annual Gala in New York City. FACES is a non profit organization affiliated with New York University Medical Center and its Comprehensive Epilepsy Center, under the direction of Orrin Devinsky, MD. Its mission is to improve the quality of life for all people affected by epilepsy through research, education, and community-building events (http://www.med.nyu.edu/faces/ ). The FACES Gala is an annual fund raising event enabling the group to further provide care and treatment for children and adults with epilepsy.
The Program note stated:
NYU faces 2007 pays tribute to Warren Lammert for his extraordinary personal generosity in supporting epilepsy treatment and research. Mr. Lammert works closely with the team at NYU faces, where he sits on the Board of Directors, in support of its ongoing mission to better understand, treat and ultimately prevent epilepsy.
The special guest speaker was Tiki Barber, who retired as the New York Giant's all-time leading running back in 2006 and is now a news and sports broadcaster.
We present here both Dr.Devinsky's introductory remarks and Warren Lammert's talk.
Orrin Devinsky, MD
Professor of Neurology, Neurosurgery, and Psychiatry at NYU School of Medicine, Director of the NYU Comprehensive Epilepsy Center
Thank you. Thank you all so much for being here tonight. It is humbling to look out on this sea of support, the incredible people that come together tonight and throughout the year. This has been an amazing year for the FACES family. Five years ago, we spoke here, about a dream – the Epilepsy Phenome Genome Project (EPGP). We envisioned a large collaborative national effort with very ambitious goals. With FACES support, we recruited Ruben Kuzniecky to direct epilepsy research at NYU. Ruben, together with Dan Lowenstein at UCSF, and $400K of FACES support, brought 14 centers through a long planning phase. NIH now funds only the top 8% of research grant applications.
Ambitious projects with big price tags have even slimmer chances. The EPGP ranked in the top 4% and was recently funded for $21M, the largest NIH grant for epilepsy. It is a national repository for information, answers, and hopefully the seed for new therapies.
The Epilepsy Trials Consortium
Another exciting, big project is the Epilepsy Trials Consortium. This group of northeast epilepsy centers will take a lead role in identifying promising new antiepileptic drugs. FACES and the Epilepsy Therapy Project helped create this entity. Jacqueline French, MD, Professor of Neurology at the University of Pennsylvania Medical School directs the Consortium. Jackie, thank you. And a round of applause for Jackie, so she knows just how much she is appreciated in New York.
Bellevue Hospital is the flagship of the 11 New York City hospitals. More than 60,000 people with seizures and epilepsy are cared for each year at these hospitals. There are more than 150 video EEG monitoring units at the academic and private hospitals in NYC -- but there is not one in a city hospital. FACES will change that with the creation of an epilepsy program at Bellevue.
FACES is about People
At its core, FACES is about people, individuals and their families. It is about helping individual patients. Also, families from all over the world and US stay in the FACES apartments when their child or family member undergoes surgery or receives specialized care. We recently received a desperate call. You may remember the highly publicized case of Filipino twin boys who were joined at the head. Four years ago they were separated. Unfortunately, one boy had a stroke and has severe epilepsy, averaging 10 major seizures a day. And he fell through the cracks of our medical system, as so many do. Josiane LaJoie is now his doctor, and while she donates her time, FACES helps cover other expenses. And that’s another small, but big reason why we are here tonight.
There is no way to fully acknowledge and thank all of the individuals who have made this evening possible. All of you, thanks.
Honoring Warren Lammert
Our honoree – Warren Lammert! It is impossible to put to words Warren’s spirit, novelty of thought, relentless passion and will. So I won’t try. I will tell you a bit about him and his achievements. Warren and his wife Kathy were confronted by perhaps the greatest of all challenges - a child with a serious medical disorder. Their daughter Sylvie has a very severe epilepsy. And despite many people's best efforts, including mine, she still does. None of us can predict what life will bring us, perhaps even less, how we will respond. Warren responded by becoming, and I don't say this lightly, the world’s leader in advocating for new therapies for epilepsy.
Epilepsy.com and Translational Research
In an email exchange that Warren and I had seven years ago, we talked about the need for better internet information about epilepsy. Epilepsy.com was born. It began as a FACES project. And it is now by far, the leading source of epilepsy information in the world with nearly one million page views per month.
Warren also founded the Epilepsy Therapy Project (Epilepsy Therapy Project), which FACES partners with on supporting the translational research grant program and the trials consortium. The Epilepsy Therapy Project is the model of how to help accelerate the cure. They do this by investing in scientists and companies to develop new diagnostic tools and therapeutic approaches and by bringing together great scientists, doctors, and business minds to focus on this goal. His efforts were highlighted two weeks ago in an article in the Science Section of The New York Times.
He is an incredible man and his friendship is one of my great treasures. Warren, we are so happy and proud to honor you tonight. As a memento of tonight, we are presenting you, son of St. Louis, and great-grandson of the governor Herbert Hadley of Missouri, with this bat. The inscription is from another son of St. Louis, Stan Musial. Stan, whose great-grandson is cared for here at NYU, may have 3 World Series rings, 3 MPV titles, and nearly 500 homers, but there is no one we would rather have on our team than you Warren. Stan's inscription reads:
To Warren Lammert, best wishes, Stan Musial.
Talk given to FACES by Warren Lammert, Chairman and Co-Founder of Epilepsy Therapy Project
For me epilepsy started with a call from my wife Kathy while I was attending an investment conference in California, 1000 miles from home. Our 8-month-old daughter, Sylvie, had experienced two seizures and was in the emergency room at Children’s Hospital in Denver. I left the conference and drove through heavy LA 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 a status seizure with the hospital staff seeming to be unable to procure the drug they wanted to stop the seizure. After some 30 minutes of seizing, the seizure stopped though Sylvie seemed only partly conscious. As the staff sought reasons for the sudden unexplained onset of seizures and status, 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 30-45 minutes, often requiring emergency Valium to stop. More seizures, more medications, another year and a half and visits to multiple neurologists in Denver and beyond.
Sylvie at NYU
Finally a colleague and friend we are honored to have here with us at our table this evening, Melissa Floren Fillippone, said you need to see Orrin Devinsky at NYU. He is the guy. Despite the best efforts of a dedicated, caring neurologist and neighbor in Denver, Sylvie was at this point on four medications and seizing a large part of each day.
We checked in at NYU for what was to be a three to four day video EEG examination and consultation. We stayed for 14 days of exceptional care by Orrin and the team including Souhel, Blanca, Ameeta, and other wonderful professionals. They focused on Sylvie’s seizures, on Sylvie the child, and on us as a family.
We left with two new medications and with improved seizure control, but more importantly with a new friend and advocate for Sylvie in Orrin – and a great appreciation for Orrin, for the NYU epilepsy team, and for FACES, one that has only continued to build over the ensuing eight years.
Unfortunately, even the exceptional dedication and care of Orrin and NYU have not meant an end to seizures for Sylvie. I left work early a week ago Wednesday to come home and skate with Sylvie on our backyard rink. I arrived home to find Sylvie asleep on our coach and to learn from Kathy that she had just experienced yet another grand mal seizure. She woke up to experience a 15 minute cluster of smaller seizures broken only with more Valium. Sylvie is not alone in experiencing uncontrolled seizures. More than 30% of those living with epilepsy today, more than a million men, women, and children in the US alone, live with uncontrolled seizures despite the best available therapies today. Many more suffer side-effects from their medicines that you or I would not want to live with.
Hope for the Future
But for Sylvie and for everyone living with epilepsy, Orrin, NYU and FACES offer something beyond even the best available care today – hope for a better future. NYU is the leading center of patient care for epilepsy in the world and sees more patients than any other center in the world. Add to this that Orrin is an extremely rare and special individual who at once is the world’s most responsive doctor while also serving as a great teacher within his profession, contributing as a prolific writer and editor, and exhibiting a great talent for leadership and motivation. And the team and partnership that has joined with him at NYU and FACES is also rare and special. All of this is coming together with your critical support of FACES to allow Orrin, Ruben and the NYU Team to continue to build a program that is today perhaps the center of excellence in patient care and has the opportunity to become, with your further support, the real center of excellence in epilepsy research, helping catalyze the new therapies so badly needed in epilepsy.
My wife Kathy and I and our family have been extremely fortunate to benefit from the care of Orrin, NYU and FACES, and we have been extremely fortunate to be in the position to give back to this program. We are dedicated to working with you, the FACES community, to continue building NYU FACES into the leading center of patient care and also of research.
The Burden of Epilepsy
For me epilepsy is a burden and an enemy that confronts a little girl that I love. But Sylvie is a happy and tenacious person who rises above her challenges and is a delight in our lives. And I want to also say that the challenge of working to make a difference for Sylvie and for all those living with epilepsy is an experience that itself is filled with rewards for me and not least in the exceptional, wonderful people I have been blessed to know and work with in this journey.
To Orrin, the NYU team, the FACES friends, those who have joined Orrin and me in working with a wider community advance new therapies through the Epilepsy Therapy Project and epilepsy.com – Jackie, Joyce, Steve, May, Jim, Kim, Bill, Chanda, Alex, Mark, my sisters Mary and Sarah, Jim and Janet, my parents and so many other friends here with us tonight, I want to say thank you and to say how happy and fortunate I am to have you as friends and partners. And finally, to my wife Kathy who lives day in and out with the challenge of caring for Sylvie and all four of our wonderful kids and who provides the backbone of support that allows me to venture also outside our home, thank you, and I love you.
For more information about the Epilepsy Therapy Project and the Epilepsy Study Consortium, please go to http://www.epilepsytdp.org/ and http://www.epilepsytdp.org/sec/study_consortium. For more information about Dr. Devinsky and Warren Lammert, please go to: (http://www.epilepsytdp.org/sec/exec_devinsky); http://www.epilepsytdp.org/sec/exec_lammert
Reviewed by Steven C. Schachter, MD