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Get to Know CURE Epilepsy

Updated: Apr 25, 2021

About CURE Epilepsy

CURE Epilepsy’s purpose is to promote and fund research to find a cure for epilepsy - all epilepsies, whether they are rare or not. Our goal is to fund novel, groundbreaking research that will make a difference in the lives of all people living with epilepsy. We fund innovative research that will help us better understand the causes of the epilepsies and catalyze that information into potential new therapies and cures.

As part of our funding efforts, CURE Epilepsy has invested significantly into understanding the causes of rare epilepsies. For example, our Epilepsy Genetics Initiative (EGI) sought to uncover genetic mutations from whole exome sequences of people who lacked a genetic diagnosis. Additionally, CURE Epilepsy’s Infantile Spasms (IS) Initiative invested deeply into understanding the biological pathways underlying IS, identifying biomarkers that might predict IS and testing potential treatments for IS.

Get to Know CURE Epilepsy

CURE Epilepsy was founded in 1998 by Susan Axelrod and a group of parents who were frustrated at the lack of progress being made toward a cure for epilepsy. Unwilling to stand by and watch the impact of seizures on their children, they combined forces and dedicated their efforts to raising money to fund research that went beyond developing a new drug or device. We were named after the one thing that no one was offering – a CURE. To date, CURE Epilepsy has raised more than $78 million for research into cures for epilepsy and awarded more than 260 grants for epilepsy research in 16 countries around the world.

We are Especially Proud of...

Our approach to research: CURE Epilepsy has led a dramatic shift in the epilepsy research community from simply treating seizures to searching for causes and therefore cures and preventative strategies.

Our emphasis on helping early career researchers: Through our Taking Flight Award, we help young researchers establish themselves independently from their mentors. We also strongly support established researchers through two other grant mechanisms focused on basic research and pre-clinical investigations, the CURE Epilepsy Award and Catalyst Award, respectively.

And key research programs we have put in place that have already made a significant impact on advancing epilepsy research.

• Sudden Unexpected Death in Epilepsy (SUDEP) research - we developed the first private U.S. program dedicated to advancing the understanding and prevention of SUDEP. Through 2020, we have invested more than $5 million in SUDEP grants, supporting 37 research projects across the globe.

• The Post-Traumatic Epilepsy Initiative, funded by a $10 million grant from the U.S. Department of Defense, supports a multi-disciplinary team approach to researching the prevention and treatment of post-traumatic epilepsy.

• As well as the CURE Epilepsy Genetics Initiative (EGI) and the CURE Epilepsy Infantile Spasms Initiative mentioned earlier.

Excited to REN because...

CURE Epilepsy is excited to be a part of REN. Our constituents represent people living with all types of epilepsies, including rare epilepsies. Being part of this organization ensures that we can help our community members, who experience a wide range of causes and consequences of their epilepsies, reach a future of no seizures and no side effects. We hope this partnership will advance knowledge sharing and efficiencies that will amplify our efforts to find cures more quickly.

My Journey and Motivation...

My older sister Ellyn had epilepsy as a result of tuberous sclerosis complex (TSC). Her seizures started at about three months of age, so living with epilepsy was my normal. I grew up around seizures, and I hated them. It felt as if all my family’s time and energy were devoted to managing Ellyn’s seizures.

I was always fascinated by the brain, and in my mid-thirties, I had a life-changing epiphany about epilepsy. At a Society of Neuroscience meeting, I saw a poster presentation featuring the first images of a mouse brain modeled as if it had TSC. Looking at the chaos of this brain, it finally clicked for me – Ellyn didn’t ask for, nor deserve, TSC or epilepsy.

This breakthrough allowed me to begin tackling my resentment toward epilepsy. In 2012, I joined the TS Alliance Board of Directors. I had already been advocating on Capitol Hill as a part of this group alongside my mother.

In 2016, CURE Epilepsy approached me to become their Chief Scientific Officer. I remember my parents sharing their excitement when, years before, when they watched CURE Epilepsy Founder Susan Axelrod talk about epilepsy on a PBS show. I took a leap of faith and accepted the role.

While research led to treatments that allowed Ellyn to have a better quality of life, it was not enough to stop her seizures from progressing. We tragically lost her in September 2020. I am honored to help drive science toward cures for epilepsy every day.

By Laura S. Lubbers, PhD, Chief Scientific Officer, CURE Epilepsy

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