CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Gardiner Lapham

Oral Testimony Provided by Gardiner Lapham
To the New Jersey State Legislature
December 17, 2012

Good afternoon. My name is Gardiner Lapham and I am here today because I lost my son to an often unheard of phenomenon, Sudden Unexpected Death in Epilepsy or SUDEP. Unfortunately, SUDEP is not as rare as we might like to think.

My son, Henry, was a beautiful, happy and healthy little boy. He was nearly 4 ½ when he suffered his first epileptic seizure. Only a few weeks after seeing a specialist and being started on medicine, Henry died in his sleep. It happened one cold February morning when I went in to wake him up and found him facedown in his pillow, lifeless. All that we did that morning could no t bring him back.

A mere five weeks after Henry’s first epileptic seizure, he had died. It happened so fast. In addition to the horrific pain of losing my oldest son, I felt so angry and blindsided. How could this have happened? He had great medical care. I was told that he would likely grow out of his seizures, not to worry. And to think, I had a background in nursing and public health and still had no idea that epilepsy could be so fatal. Why had no one told me? Could I have done something to prevent this?

After Henry died, I quickly schooled myself on this little discussed phenomenon and I also worked to educate our local Medical Examiner. I learned that among children with epilepsy, SUDEP is the leading cause of death, causing at least 38% of all death.

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CURE has been a pioneer in the field of SUDEP research. Committed to understanding SUDEP better and luring the best and brightest minds to help find a cure, CURE has funded 21 grants since 2004, totaling more than $2 million.

Sudden Unexpected Death in Epilepsy (SUDEP) refers to the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy. It may be seen with or without evidence of a recent seizure and no cause of death is found on autopsy (Nashef et al., Epilepsia 1997).

CURE is proud to have taken the first big risk by funding research in SUDEP - an area that was lacking serious attention. Doing so has helped build the momentum and interest among professionals that has ignited more research into the field.

Milestones
In 2004, CURE presented the first SUDEP grant of $49,997 to Carl Faingold, PhD - Prevention of Sudden Death in Epilepsy. In 2008, CURE board member Jeanne Donalty assisted in planning of the first-ever NINDS meeting on Carl FaingoldSUDEP. When Death Strikes Without Warning (pdf). In 2012, CURE board member Gardiner Lapham co-chaired the first-ever Partners Against Mortality in Epilepsy (PAME) meeting in Evanston, IL.

Newsweek: Epilepsy in America: What Must Be Done

With nearly .90 of every dollar going to research and program activities, CURE has leveraged  investments including assisting in the NIH funding of a SUDEP Center Without Walls in 2011; and planning for the establishment of a SUDEP surveillance system with CDC in 2012.

CURE Board Member Gardiner Lapham testified in support of a NJ-state bill that would require medical examiner training of SUDEP and request decedent’s medical information and brain donation for research. Passing of the bill would indicate significant progress toward identifying additional cases of SUDEP and help collect information to put toward research into causes of SUDEP.

Legislation:
Introduced October 4, 2012, this bill requires that the New Jersey State Medical Examiner establish a program to educate medical examiners about sudden, unexpected death in epilepsy (SUDEP), which is is believed to account for up to 17 percent of deaths in people with epilepsy.
Download the legislation (pdf)

 

 

Grants Funded To Date

Year/Amount Grantee Project
CURE Epilepsy
2004
$49,997
Carl L. Faingold, PhD
Southern Illinois University School of Medicine
Prevention of Sudden Death in Epilepsy
CURE epilepsy
2005
$50,000
Walter M. St.-John, PhD
Dartmouth Medical School, Lebanon, NH
Seizures and Respiration – A Possible Basis for SUDEP (Sudden Unexpected Death in Epilepsy)
CURE epilepsy
2007
$75,000
Carl Faingold, PhD & Victor Uteshev, PhD
Southern Illinois University School of Medicine / Carbondale, IL
SUDEP Prevention - Experimental Serotonergic Mechanisms in DBA/2 Mice
CURE epilepsy
2007-2008
$100,000
Anne Anderson, MD & Matteo Vatta, PhD
Baylor College of Medicine / Houston, TX
Myocardial Ion Channel Remodeling: A Candidate Mechanism for Sudden Death in Epilepsy
CURE epilepsy
2008
$245,301
Steven L. Bealer, PhD
University of Utah, Salt Lake City, UT
Predictors of Cardiac Risk and Beneficial Effects of Pharmacotherapy in Epilepsy
CURE epilepsy
2009
$100,000
Alica M. Goldman, MD, PhD
Baylor College of Medicine, Houston, TX
Submicroscropic Rearrangements in Cardiac Arrhythmia Genes: The Quest for Genetic Risk Factors for SUDEP
CURE epilepsy
2009
$101,100
Elizabeth Donner, MD
University of Toronto, Hospital for Sick Children, Toronto, Canada
Registry of SUDEP in Children
CURE epilepsy
2009-2010
$100,000
Lisa Bateman, MD & Masud Seyal, MD, PhD
University of California, Davis, CA
Efficacy of Fluoxetine in Reducing Ictal Hypoventilation in Patients with Partial Epilepsy
CURE epilepsy
2010
$80,000
Carl Faingold, PhD
Southern Illinois University School of Medicine
Prevention of SUDEP by Serotonergic Agents in DBA/1 Mice
CURE epilepsy
2010-2011
$50,000
Torbjorn Tomson, MD, PhD & Peter Mattsson, MD, PhD
Karolinska Institutet; Uppsala University
Role of pharmacological treatment in the prevention of SUDEP
CURE epilepsy
2010-2011
$37,500
Sebastian Maier, MD, PhD & Massimo Mantegazza, PhD
University Hospital of Wuerzburg; IPMC, Nice-Sophia Antipolis, France
Cardiac arrhythmias and SUDEP in SMEI and other Nav1.1 (SCN1A) related epilepsies
CURE epilepsy
2011
$100,000
Jack Parent, MD & Lori Isom, PhD
University of Michigan
Cardiac Mechanisms of SUDEP in Dravet Syndrome
CURE epilepsy
2011-2012
$100,000
Daniel K. Mulkey, PhD & Anastasios Tsingounis, PhD
University of Connecticut
KCNQ Channels in RTN Chemoreceptors
CURE epilepsy
2012
$100,000
Edward Glasscock, PhD
Louisiana State University Health Sciences Center
Pharmacological reversal of cardiorespiratory deficiency in the Kcna1-null model of SUDEP
CURE epilepsy
2012
$100,000
Chris Semsarian, PhD / Ingrid Scheffer, MD
University of Sydney/University of Melbourne
Neuro-Cardiac Genetic Basis of Sudden Unexpected Death in Epilepsy (SUDEP)
CURE epilepsy
2012
$100,000
Sanjay Sisodiya, PhD
University College London

Samden Lhatoo, MD
Case Western Reserve University

Maria Thom, MD
University College London

Jane Hanna
Epilepsy Bereaved
The Brain in Sudden Unexpected Death in Epilepsy (SUDEP) - New Insights from Pathology
CURE epilepsy
2012
$100,000
Geoffrey Pitt, MD, PhD
Duke University
Development of a Mouse Model for SUDEP
CURE epilepsy
2013
$100,000
Gordon Buchanan, MD, PhD
Yale University
Role of Vigilance State and Circadian Phase in Seizure-Related Death
CURE epilepsy
2013
$100,000
David Paterson, PhD
Boston Children’s Hospital
Searching for Common Gene Variants in Sudden Death in Childhood with Febrile Seizures, SIDS and SUDEP
CURE epilepsy
2013
$100,000
Else Tolner, PhD / Arn van den Maagdenberg, PhD
Leiden University Medical Center (LUMC), the Netherlands
Excessive Neuronal Inhibition Changes Physiological Functions and Increases SUDEP Risk

 

 

 

CURE For questions, please contact Julie Milder at the CURE office, 312.255.1801, or email julie@cureepilepsy.org.

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