Research
State of Research in the Epilepsies Report 2013
LETTER FROM THE CHAIR
Dear Friends,
Welcome to the State of Research in the Epilepsies 2013 report. Within these pages,
we hope you will find information that is both useful and compelling. We are grateful to
the many people who contributed to this project because they—like you—recognize
the urgency of moving our collective agenda forward, faster.
Like our last report of 2010, the news is encouraging, but also very sobering.
It’s encouraging because the last few years have brought a number of promising trends. Collaboration has increased throughout the field. On the whole, the community of epilepsy
researchers is strong and growing. More young, bright scientific minds are joining our ranks,
and we have witnessed an increase in epilepsy-related research publications and society
memberships. And, most importantly, recent scientific advances have provided renewed
hope that a disease modifying therapy or cure is within reach.
But, it is sobering because we continue to face major challenges. Per patient funding of epilepsy research continues to be inadequate to create long-overdue breakthroughs.
Basic and clinical epilepsy research is still primarily focused on seizure control rather than
preventing or stopping the progression of the disease. And, finally, for scientific discoveries
to translate into cures, our community needs to come together to develop and implement
the infrastructures needed to support novel clinical trials.
For the 65 million people worldwide with epilepsy, progress is unacceptably slow. Children
with uncontrollable seizures frequently face a lifetime of intellectual and developmental
disability. Mortality rates among people with epilepsy are three times the rate of the general
population, and sudden death rates are more than twenty times higher.
In this country alone, one in 26 people will develop epilepsy in their lifetimes. For their
sake, we must continue to be vocal advocates for making epilepsy research a national priority.
Our community is strong, energized and poised to make true strides towards eliminating
seizures and their consequences. This collective commitment, along with a significant
increase in funding, will help us to realize the true promise of research—transforming
and saving lives.
I am dismayed because as I read through
this report, the enormous challenges we
face in advancing this field crystallize. The
data confirms that funds for epilepsy
research—from government, industry, and
private sources—are totally insufficient
given the magnitude of the problem and
the status of our progress in the field. We
know now that the vast majority of funding
goes to incremental improvements in anticonvulsant
medications (which are largely
ineffective for about 40% of patients) rather
than to uncovering underlying mechanisms
that may lead to cures. We also know that
the number of basic researchers in
epilepsy is declining and that those
involved have been less collaborative than
their colleagues in other neurological
disorders.
But, we also have great reason for hope.
While our challenges are significant, I have
every confidence that, as a community, we
have the will and determination it takes to
make meaningful progress toward
defeating this disease. We are finally
making strides in our efforts to
communicate well beyond our community
the critical importance and urgency of the
need. This gives me tremendous faith that
together we can turn the challenges
detailed in this report into opportunities to
make a real difference for our patients and
loved ones.
It is within our power to make this happen,
but we must act now. Lives are being
ravaged and lost every day that we delay. I
have tremendous hope that these reports
in coming years will tell the stories of great
progress toward our common goal—a
cure.
Sincerely,
Read the full report
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