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CURE Epilepsy

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Nonprofit Overview

Causes: Epilepsy Research, Health

Mission: Our mission is to find a cure for epilepsy, by promoting and funding patient-focused research.

Results: CURE Epilepsy has led a dramatic shift in the epilepsy research community from simply treating seizures to enhancing understanding of underlying mechanisms and causes so that cures and preventative strategies can be found. CURE Epilepsy’s research program is cutting-edge, dynamic, and responsive to new scientific opportunities and directions through both investigator-initiated grants and unprecedented scientific programs and initiatives. In 20 plus years, we have invested over $78 million in research with 260+ grants in 16 countries worldwide

Programs: CURE Epilepsy awards seed grants for novel research projects that address the goals of "no seizures, no side effects. " these grants allow new and established investigators to explore new innovative areas and collect the data necessary to apply for further funding by the national institutes of health (nih). CURE Epilepsy sponsors scientific conferences that are working to bring the brightest minds together to discuss some of our biggest and most important issues, driving awareness of the prevalence and devastation of epilepsy through the frontiers in research seminar series. CURE Epilepsy believes that awareness is a necessary vehicle to increase the amount of funding for basic research toward a cure for epilepsy.

Community Stories

11 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

I was introduced to CURE Epilepsy in 2019 when my then one year old daughter started having uncontrollable seizures. CURE has an amazing Founder in Susan Axelrod and an equally amazing team of committed board and staff members, many of whom were a personal resource and lifeline navigating my daughter's epilepsy. What I like most about CURE is that they are directly funding scholars and research that can lead to new treatments--and hopefully a cure--for epilepsy and all of the challenges that come along with it. They work tirelessly on behalf of their cause, and I hold them and their work in the highest regard.

Donor

Rating: 5

It has been an honor and a privilege for my wife and I to support CURE's mission to end epilepsy. It has been six years since our baby girl, Vivian, lost her battle with epilepsy. It has been six years since we decided we would honor her memory by carrying on her fight and helping to make sure other families do not endure what ours did.

CURE is full of so many wonderful, passionate humans who have helped us find our place and have a greater impact in the epilepsy community. Thank you for everything you do to fill such a critical gap in epilepsy research funding.

Donor

Rating: 5

CURE has done an amazing job of (1) raising awareness about Epilepsy and (2) raising much needed public and private funds for research into the causes and possible cures for Epilepsy. Since it's founding in 1998, CURE has raised over $78 million to fund over 270 research grants focused on Epilepsy. CURE has helped move Epilepsy out of the shadows by shining a light on the number of people in the United States whose lives are impacted by seizures as well as the importance of finding a cure for this devastating condition. In addition, CURE is a very efficient, well-run organization that steers the vast majority of the money it raises toward research and awareness programs. I can't say enough good things about the organization and it's mission.

Volunteer

Rating: 5

CURE is a wonderful organization. I've worked with them for over 10 years. As someone with epilepsy, I have great trust in the work they do and the research they fund. Research for epilepsy is so underfunded and so many people suffer and die unnecessarily due to lack of awareness, knowledge and advancement in medicine for those in need. CURE is helping lead us to a brighter future.

Donor

Rating: 5

It's truly amazing how much work and dedication CURE has on the mission of finding a cure for Epilepsy. I personally have learned so much about Epilepsy from the virtual events I have attended. The staff is absolutely amazing and always a pleasure working with them. I have the utmost respect for CURE staff and the mission, and I have seen firsthand how much they have worked for the cause! Keep up the great work!

Professional with expertise in this field

Rating: 5

I met the founders of CURE Epilepsy (CURE) at its inception, and have had the privilege of being closely engaged in the work of the organization ever since. The impact of CURE on the world of epilepsy has truly been extraordinary and incalculable, primarily due to one main reason: their sustained laser-focus on the goal of advancing research into the nature of epilepsy. CURE understands that the challenges of finding effective therapies and true cures for epilepsy are enormous, primarily because there is so much that we still don’t understand about the way the human brain works, and what happens when it gives rise to seizures. Research is the only way we will be able to unlock these mysteries, and CURE has been leading the charge in fueling this effort. I am deeply grateful for the support CURE has provided to the scientific community. Mark my words – the day will come when people look back and recognize how the discoveries being made today by CURE-supported researchers were a critical part of the story of the end of epilepsy.

Board Member

Rating: 5

We have been involved with CURE Epilepsy (CURE) for over ten years. Our daughter Ella suffers from intense seizures and when we found CURE Epilepsy, we were given hope that one day a cure for her could be found. It was devastating to feel so helpless when Ella was diagnosed with epilepsy, and by working with CURE, we felt as if we were doing something.

After looking into various epilepsy charities, we were drawn to CURE because of their mission of "No Seizures, No Side Effects." We wanted the dollars that we donated to go straight to research, and that is what CURE does. Since then, we have been very impressed with the top-notch researchers that are drawn to CURE and the quality of the research that is funded. We have become active in fundraising for CURE and have hosted a successful walk/run for many years. Our event not only raises much needed funds for research but also creates epilepsy awareness. The staff at CURE are amazing, and make hosting a fundraiser so streamlined.

We feel very lucky to have found CURE Epilepsy and are so thankful to the founders for their relentless fight to stop seizures.

Volunteer

Rating: 5

My connection with CURE Epilepsy began when my life-partner’s son Cameron died of something known as SUDEP, the acronym for Sudden Unexplained Death in Epilepsy, in November 2009. He was a strapping young man, successful in his early business, and loved by all those who knew him. He was 36 years old. He had had epilepsy since first diagnosed at 16 years of age, and had very few seizure episodes his entire adult life. He was on medication and seemingly in the prime of life… until he went to sleep one night, had a seizure, and did not wake up the next morning.

Shortly after this shocking and untimely death, his mother and I became members of CURE, an organization founded by Susan and David Axelrod in honor of and for their daughter with epilepsy. Ellen and I began to advocate for the epilepsy community. We started our own fund-raising foundation in honor of Cameron, called HOPE4SUDEP.org for basic research to learn more about SUDEP, and also to aid in the larger goals of finding a cure for epilepsy. This was done under the auspices of and with the invaluable help of the parent organization CURE Epilepsy,

Since that grief-stricken early beginning, now 11 years hence, we have participated in countless events and efforts with CURE, helping to raise money for their express and unrelenting goal of finding a cure for epilepsy. This organization is the most amazing and successful organization of which Ellen and I have ever been a part. They are dedicated and resolute in following their initial aim of finding a cure for the dreadful condition/disease of epilepsy.

It is common knowledge now that CURE has raised tens of millions of dollars and funded hundreds of research projects in 20 countries around the world. All this has been done with a small staff of carefully-selected people and the bare minimum of administrative costs. Seldom have so few done so much good for so many…with relatively little fanfare, just hard work.

They have grown exponentially over the twenty years of their existence, and have necessarily taken on more staff to accommodate their growth in fund-raising activities and interaction with both the scientific and patient/advocate communities relating to epilepsy.

From the humble beginnings of four moms at a kitchen table, CURE Epilepsy is now a world-class research-supporting organization with a heart as large as their intentions of defeating this disease which leaves such devastation in its wake.

We, my partner and I, cannot say enough about the value and goals, and the empathy and soul of this organization, CURE Epilepsy.

Michael Schafer, MD and Ellen Benninghoven (Cameron’s mother)

Professional with expertise in this field

Rating: 5


I have worked closely with the truly remarkable founders of CURE Epilepsy ever since they initiated their bold mission to cure, not just treat epilepsy, a transformative goal that now promises to change the meaning of this diagnosis. As a neurologist, scientist, and past president of the American Epilepsy Society, it has been so gratifying to help them identify and train young investigators, break open new research fields in SUDEP, Infantile Spasms, and traumatic brain injury in order to accelerate the development of new therapies. CURE Epilepsy began by embracing both the clinical and basic epilepsy research community, bringing together the NIH, academia, and industry to foster national and international collaborative team science. We all owe them and their supporters an enormous debt and our continuing commitment to tomorrow's children and their families.

Board Member

Rating: 5

I have been involved with CURE Epilepsy for almost 25 years, even before it formally became a nonprofit organization. Our son had seizures which were uncontrolled by a variety of medications and his neurologist connected us with Susan Axelrod, CURE Epilepsy's founder. The research done by CURE Epilepsy's grantees will hopefully allow other families to avoid the suffering caused by seizures that our son had to endure. We are grateful to be lucky that the epilepsy ketogenic diet was a success with our son and today, he leads a seizure free life. I continue to support CURE Epilepsy because of the great research work that its small and efficient staff accomplishes for the epilepsy community!

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Donor

Rating: 5

We met the folks from CURE nearly 8 years ago. They are dedicated to the mission of finding a cure for epilepsy and educating the public. They have an amazing Founder and Board of Directors. The staff is small but does more than most organizations with double and triple the staff. They are very professional and have granted research to organizations around the globe. They work tirelessly to fund young and novel researchers. Cant say enough about this special organization.