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


Gardiner Lapham

CURE Board Chair Gardiner Lapham has met with medical examiners and physicians to raise awareness of SUDEP and to advocate for the importance of correctly identifying and registering these cases. She advises on the CDC's Sudden Death in the Young (SDY) Registry and Co-Chairs the Partners Against Mortality in Epilepsy (PAME) meeting.

Having lost her own son, Henry, to SUDEP 7 years ago, Gardiner recounted the pain and confusion her family felt in a written statement read at the SDY launch in Alanta in December. “I was flying blind throughout the entire death investigation process, but somehow I knew I wanted two things. First, I wanted Henry’s death to be classified as SUDEP. How could I possibly let him slip from this world and not have the reason for his death listed on his death report? It felt as if we were minimizing his death, and therefore his life, by not having the courage to call it what it was. I just couldn’t believe this was as rare as we had been told.

“I wanted Henry’s death to be classified as SUDEP. How could we possibly let him slip from this world and not have the reason for his death listed on his death report?”

And second, I wanted Henry’s tissue to go to research. If we could contribute in some very minor way to the understanding of this phenomenon, than at least Henry’s too short and beautiful life may have helped to ultimately prevent further tragedies.”

LEADING THE WAY IN SUDEP RESEARCH
CURE is the leading private funder of Sudden Unexpected Death in Epilepsy (SUDEP) research, pioneering the focus on SUDEP since 2002. By launching a targeted research program so early on, CURE helped to build a foundation of basic, translational, and clinical research that will inform future studies into the prevention of SUDEP. Strides continue to be made in the field.

CURE invested more than $2.3 million into SUDEP research, which includes 23 grants to 32 investigators in 8 countries. Notable CURE-funded milestones include:
  • Establishment of respiratory dysfunction as a leading potential cause of SUDEP
  • Identification of serotonin pathways in SUDEP
  • Revelation of a link between mutations in genes found in both the heart and brain in SUDEP
  • Implementation of a network of pediatric neurologists to develop and support a SUDEP registry for children
  • Development of animal models that can be utilized to study the underlying mechanisms and risk factors for SUDEP



Hope Research CURE

OTHER SUDEP INITIATIVES
CURE is a proud partner in a number of public and privately funded initiatives aimed at advancing research, education, and prevention of SUDEP. Major contributions include:

2008
- CURE co-hosts the first ever NINDS SUDEP conference.
- CURE helps found the AES SUDEP Taskforce and remains an active participant.

2010
- CURE and NINDS leadership develop Center without Walls (CWW) initiative to advance discovery in critical topic areas in epilepsy.

2011
- NINDS identifies SUDEP as a 2nd Center without Walls (CWW) initiative and funds planning grant.

2012
- CURE participates in planning and execution of first Partners Against Mortality in Epilepsy (PAME) conference.
-  CURE participates in creation of the North American SUDEP Registry (NASR) and serves on the Executive Committee.

2013
- CURE participates in the SUDEP Institute launch and serves on Steering Committee.

2014
- CURE advises on the CDC’s Sudden Death in the Young (SDY) registry.
- CURE co-chairs the second bi-annual PAME conference.
- NINDS to announce a $27 million investment in SUDEP CWW, to include many CURE-sponsored researchers.

 

ONE PERSON CAN MAKE A DIFFERENCE

Chris DonaltyChris Donalty was a senior in college, ten weeks shy of graduation. He was on the Dean’s List. His passion was baseball. Always there for his friends and family, Chris was generous and thoughtful.

But he struggled every day of his life with the impacts of epilepsy: the mind-numbing medications and their side-effects, short-term memory loss, lethargy. Then there was the constant unpredictability—when and where would the next seizure happen?

His parents thought they had seen the very worst of epilepsy, until the day they got the call that Chris had died of an epileptic seizure at the age of 21.They had no idea that he was at risk of losing his life to this disease – that epilepsy kills thousands of Americans in this same way each year.

Out of this tragedy, Chris’s mother Jeanne Donalty became one of the staunchest advocates for SUDEP research. She served on the CURE Board of Directors, became a legislative advocate testifying before Congress on numerous occasions, founded an annual event whose proceeds fund key SUDEP research named grants, and currently serves on CURE’s Research Committee.

 

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
2014 Franck Kalume
Seattle Children's Hospital
A comparative study of sudden unexpected death in mouse models of focal cortical dysplasia and Dravet Syndrome
2014 Lisa Bateman
Columbia University, New York
SUDEP risk and biomarkers in the surgical epilepsy population
2014 Ruth Westenbroek
University of Washington
Mechanism of anti-epileptic action of cannabidiol (CBD) in a mouse model of Dravet Syndrome and SUDEP

 

 

 

CURE Questions are welcome and should be directed to Liz Higgins at liz@CUREepilepsy.org or 312-255-1801.

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