CURE Epilepsy gave my organization, the NORSE Institute, fiscal sponsorship this past fall, allowing our us to have non-profit status through them. The NORSE Institute is a fledgling rare disease organization. Basically, it's just one person (me) leading the effort to bring together clinicians, scientists, patients and families affected by new onset refractory status epilepticus (NORSE). Although we have succeeded in spurring research and building our community, we are still too small to gain non-profit status which is needed to apply for grants and accept money as charitable donations. With CURE's fiscal sponsorship, we can do both.
CURE Epilepsy has the insight to recognize that there are many ways to fulfill their mission to fund breakthrough research to cure epilepsy. They award major epilepsy research grants directly to investigators all over the world. They also support research for the often-overlooked rare epilepsies by supporting small rare disease organizations like mine that have built research/family networks. CURE initiated the CURE Rare Epilepsy Partnership grants in which CURE and a few small rare epilepsy advocacy groups (the NORSE Institute was one of them) collaborate to fund research in the rare epilepsy space.
Finally, CURE's support has been on a personal level as well. When I was not able to attend our annual major research event recently that occurred in conjunction with the American Epilepsy Society (AES) conference, due to a family emergency, CURE's events manager and senior development officer (who were attending AES) stepped in to help manage the event in my absence! This unexpected help speaks volumes of CURE's commitment to support research at every level.
Nora Wong, PhD
Executive Director
NORSE Institute
www.norseinstitute.org
I worked as a consultant in research for CURE Epilepsy throughout 2024. This group is thoughtful about how they raise funds and spend available resources to further their work in funding research initiatives of all types to meaningfully impact the lives of those living with epilepsy.
I have long had an excellent impression of this organization from the "outside", but now I truly know what goes into their decision making and am even more impressed.
CURE is focused on research that generates an understanding of the causes of seizures and ultimately how epilepsy can be controlled or eliminated. Emphasis is placed on developing innovative research that lead to development of new approaches to understanding and controlling and ending epilepsy. CURE is a collaborative organization that works with a broad spectrum of researchers and organizations. The goal is to hasten the development of the science behind epilepsy and the development of breakthrough therapies.
As a researcher who has invested almost two decades trying to understand risk factors for developing epilepsy after TBI, I am deeply indebted to the CURE Epilepsy Foundation and their commitment to supporting investigators working to understand epilepsy in all forms, its many contributing mechanisms, and innovative solutions to its prevention and management that empowers patients and their providers to make decisions that are right for them. I have benefited from the Foundation's funding streams support, encouragement, and vision for the field. I believe the leadership, collaborative environment, and scientific advancements that the CURE Epilepsy Foundation has facilitated are creating scientific momentum, community awareness and an advocacy platform from which important epilepsy breakthroughs are on the horizon for the many individuals dealing with this condition and their families.
CURE Epilepsy is a nonprofit that truly merges community and research to raise funds and hope for people and families impacted by epilepsy. This organization is remarkable in its ability to mobilize the full spectrum of stakeholders, from communities to scientists to clinical teams and laboratories, around their goal to assist individuals in living free from seizures until the goal of reaching a cure for epilepsy in achieved. The CURE team is dedicated and passionate, and transparent in its partnerships and mission. The administrative and scientific leadership is exceptional and of the highest caliber with the skill and talent to foster advances that improve health outcomes and wellbeing for people with epilepsy. The research they fund shows strength in its scientific rigor, and the support and education they provide to the epilepsy community is steadfast and compassionate. This is an outstanding organization that is supporting top tier research on the path to finding a CURE for epilepsy.
Working with the CURE Epilepsy team is always such a pleasure! They are a smart, passionate, and responsive group of changemakers with a proven commitment to the work they do.
CURE Epilepsy has played a transformational role in fostering, advocating for, promoting and funding epilepsy research in general, and research into Sudden Unexpected Death in Epilepsy (SUDEP) in particular. Through its research award programs for SUDEP, CURE has promoted the work of young scientists who have gone on to lead large federally funded projects that began with CURE support. CURE's role in the larger ecosystem, in bringing biomarker discovery and preventive strategy development to the forefront, has been foundational, and will have lasting impact. In my own case, CURE funded a SUDEP Neuropathology project that laid the groundwork to the first documentation of brainstem damage in persons with epilepsy and SUDEP. This led to an NIH project as part of a large consortium effort, and further descriptions of neuronal and astrocytic changes in SUDEP brains. This in turn opens up many avenues of research into specific neuronal populations, pathways and neurotransmitters that will one day lead to prevention. This is just one of many such examples of CURE support. Their work is invaluable.
I have collaborated with CURE Epilepsy for the last 11 years. I specifically work with CURE Epilepsy’s research team, helping to support their research grant programs. During this time, I have found their team to be incredibly smart, responsive and committed to their cause. The team has a passion for advancement in Epilepsy research while also being focused on the everyday tasks that allow this research to advance. This group runs a thorough grant process starting with the multiple targeted RFAs and concluding with awarding novel, cutting edge research. Throughout the grant life cycle, I team with CURE Epilepsy staff to ensure their awardees, scientific and lay reviewers and interested applicants are provided with accurate and detailed information about the grant programs. The team at CURE is always interested, invested and engaged in their work and with their constituents. They are a wonderful team to work with and to learn from.
I had a temporary role with CURE Epilepsy from January - May 2024. It's a great organization filled with so many smart, dedicated people. It's clear that they care about the people they are trying to help. I was especially impressed with their staff and their board members. They are great stewards of the funds they raise.
We got involved with CURE Epilepsy because they are the only organization dedicated to research and helping find a cure(s) for epilepsy. We believe in their mission and hope to help them reach their goal!
CURE Epilepsy provided me with hope during my daughter’s darkest days. Funding research and bringing hope to other family’s has kept me going beyond her death. I am eternally grateful for CURE’s focus on vetted research that is pushing science forward and their programming that helps Al of us non-scientists make heads or tails of it all. No non-governmental agency is doing more to research epilepsy than CURE Epilepsy.
CURE Epilepsy is a superb nonprofit that truly cares about fulfilling its mission of funding patient-focused research to find cures for the epilepsies. Aside from its focus on research, CURE Epilepsy also engages in several other types of high-quality programming and communications to support researchers as well as those living with epilepsy. On top of that, the staff is passionate about their work and improving the lives of people with epilepsy everywhere.
Wonderful organization run by people who care about patients and are motivated to help fight epilepsy. This organization holds a special place by funding scientists who think outside the box and are dedicated to research aimed at identifying new treatments for epilepsy.
My volunteer experience with CURE Epilepsy was amazing! Everyone I worked with was so helpful and dedicated to the mission of CURE. One of the best nonprofits I've worked with.
Great effort to unearth the most important research and clinical needs of people with epilepsy and fund research and programs to address them. Very professional organization, fundraising, grant review and management.
I first became familiar with CURE over 5 years ago through my work in the pharmaceutical industry developing a new epilepsy treatment. Over the last 25 years, CURE has developed a fantastic and unique reputation across all parts of the epilepsy community for supporting and funding cutting edge research to advance us towards a world free of seizures. CURE not only plays a vital role in the field of epilepsy research ecosystem but also it is staffed by the most dedicated and talented individuals who work tirelessly every day in support of CURE’s mission. I am now a Board member and am in awe of the many extraordinary individuals on the Board who have lived through the most difficult family challenges resulting from epilepsy, and who have responded by dedicating their lives to supporting others and to a hopeful future where other families do not need to suffer. I am truly proud to be associated with CURE.
I have been working with CURE Epilepsy for the last six years as a scientific consultant. I find their work on epilepsy research strategic, impactful, and scientifically informed. The fact that CURE Epilepsy lets science lead the direction and efforts means everything to me. Every aspect of the work that CURE Epilepsy does is exceptional - from sending out RFAs to selecting potential grantees to overseeing the granting process. In my time, I have found the employees at CURE Epilepsy to be prompt and professional, with a laser focus on advancing epilepsy research and advocacy. I am proud to be associated with CURE Epilepsy as I know that each word I write will be read by people who need this information and that CURE Epilepsy takes the job of finding cures for the epilepsies its mission.
Not only is CURE Epilepsy "the" place to go to fund critical research to find a cure for this oftimes devastating condition, the organization also does a wonderful job of educating the community (those who have a relationship to epilepsy and those who don't) on the basics of epilepsy, the impacts of epilepsy, and the power and importance of research to find a cure. The programs that the organization has developed are creative, engaging, and thoughtful. Watching how the organization has grown over the years provides me with confidence that we will one day have a cure, and in the meantime, the epilepsy community will be further empowered to both ensure that they are getting the best care from their providers and drive changes in how much funding the medical condition receives to accelerate research for a cure.
CURE Epilepsy has been an amazing professional and compassionate organization to work with. They provide essential funding to researchers in epilepsy that allows early investigators to get a great start in their research career and move on to more significant funding. They have given voice to priority areas of research and followed through to "walk the walk" not just "talk the talk". This is the only way that we will find a cure for epilepsy, one small step at a time.
Working with CURE Epilepsy over the 2022 summer was one of the most enriching experiences I have ever had. I contributed to the research team as a summer intern and worked on projects such as categorizing the clinical trials done on epilepsy using clinicaltrails.gov, explored impact reporting tools, and updated information about the disease burden of epilepsy. All members of the staff were warm and welcoming. They were willing to discuss and explain current research on neurological disorders and had genuine drive to help advance the methods of care for epilepsy. Dr. Lubbers, the chief scientific officer, was enthusiastic about inclusivity and having a diverse range of opinions—which I greatly appreciated—and made sure to invite guest speakers to webinars who have had lived experiences with epilepsy, and in general, was always eager to hear new ideas. She is an amazing leader and role model who was organized, passionate, and experienced. I am excited to see what CURE does next in terms of webinars, grant funding, spreading awareness on SUDEP, and more!
I love CURE Epilepsy! Have worked at CURE for 6 years in various roles within Development, the Executive Department, and for the last 4 years in the Research Department. What an exceptionally well-run organization. My colleagues are so passionate and dedicated in carrying out their responsibility in supporting CURE’s mission to find a cure for epilepsy. I learned so much about the research funded by CURE and how it makes grants to researchers with its precious donor contributions. CURE is a forward-thinking organization, promoting and funding patient-focused research. Although I have just retired, I’m staying on as a volunteer. I’m proud to continue to work for CURE as it continues to support the community, making a difference and driving science forward. I strongly champion this amazing non-profit.
My name is Hannah Whitten and I am a proud board member of CURE Epilepsy, the largest private funder of research for a cure for epilepsy. I got involved with CURE after my brother Dylan passed away in 2017. Dylan was able to get involved with CURE right before he died, and it made such a huge impact on him to see such an incredible group of stakeholders working together to find a cure. Please consider donating because through research, there is hope.
This organization is the only one whose mission is to find a CURE for epilepsy. While other organizations play equally important roles, the most important thing to me is a cure for my son who is not 100% controlled by medication. Epilepsy is not a condition that many of those that have discuss...mostly due to stigma. So, the 70% that are controlled by meds are not really heard from. CURE gets the word out, with annual benefits and other communication methods. CURE is passionate-they educate via webinars, articles, etc. I feel that my donations are directed to a common mission. They are also available/receptive any time I have a question or suggestion.
My family has been involved with CURE for several years now. When my daughter received her diagnosis, and we first began her treatment journey, it was staggering to me how unavailable concrete answers were. Once I realized how vast the epilepsy landscape was and how much research still needed to be done to provide those answers, I immediately began looking for organizations to support. Two things drew me to CURE Epilepsy: 1) CURE is research-focused and committed to funding good science. After serving on the board of directors and various committees within the organization, I can attest to that unwavering commitment. The staff and volunteers are highly qualified and motivated to use donations wisely and target not only the best science, but also to engage more researchers in the field itself. 2) CURE was founded by a mom, just like me, who took matters into her own hands to make a difference for her child. If one mom could start an avalanche like CURE to help advance research and generate hope for other parents and patients suffering without answers, I wanted to be a part of that. CURE continues to expand what it means to fund a cure for epilepsy, forging new paths and widening others, all to reach the goal of "no seizures, no side effects".
My first introduction to CURE was in 2000 when I heard Susan Axelrod's impassioned lecture at the 2000 White House Initiated Curing the Epilepsies Conference at the National Institutes of Health. In her lecture, Susan, one of the founding parents of CURE shared her daughter's journey with epilepsy and challenged the epilepsy research community to think beyond the symptomatic treatment of epilepsy and to dream of a day when there may be a cure for the millions of patients worldwide who suffer from unrelenting seizures and epilepsy related comorbidities including depression, anxiety and cognitive decline. I knew then that CURE was an organization that I wanted to support in anyway that was feasible and within my means to do so. Since then I have served as a volunteer, advisor, grantee and Research Director from 2011-2015.
As a grantee, CURE funded a high risk proposal that aimed to characterize a new animal model of viral encephalitis. This funding was important for us to advance the Theiler's Murine Encephalomyelitis model of epilepsy. Since then, the use of this model has provided the research community with new insights into how brain infection leads to epilepsy and may someday lead us to more effective therapies for the treatment and prevention of encephalitis induced epilepsy.
This is just one of many examples of how CURE funding has helped shape a better understanding of epilepsy and aided in the advancement of cutting edge science that aims for a CURE. When one looks at some of the major advances in epilepsy research over the last two decades, you often find that early funding of the investigative team came from CURE.
Since their inception in 1998, CURE has remained true to their original vision and mission and they have been an outstanding steward of valuable donor resources. As a DONOR, I know that any financial support that my wife and I might be able to provide is being used to fund outstanding peer-reviewed science that I know will someday change how we approach the prevention and treatment of epilepsy.
I am part of the CURE post-traumatic epilepsy initiative since many years now. It has been a very fruitful collaboration and an injection of energy. Thanks to Cure support we were able to speed up our studies, but especially we had the possibility to join a very active consortium aimed at discussing hypothesis, sharing data and cross-validating results across preclinical models and patients. None of the results achieved would have been possible without CURE Epilepsy.
As a researcher devoted to develop new treatments for epilepsy I have been part of the CURE Epilepsy family for almost 15 years. When I moved to the United States from Switzerland I was a newcomer in translational epilepsy research and CURE jumpstarted my research with a generous research grant award that helped me to consolidate and validate my research ideas. Over the years and two additional CURE grant awards later, this idea has matured into a new treatment that can be developed further for the prevention of epilepsy. Research funding from CURE has always meant a lot to me, because it is generous donors and persons with a history or connection with epilepsy, which stand behind every single research dollar invested into research. This is a highly motivating factor for doing research. It is about doing research for those affected by epilepsy. Especially rewarding is the fact that CURE has a wide reach and disseminates the work of its grant awardees to the wider epilepsy community. As a result persons with epilepsy frequently reach out to me to learn more about my research, which is so important. CURE is an organization which forms a community, which connects researchers with patients and with advocates. It is a true family and I am proud to be part of it.
As a consultant, I have worked on and off with CURE Epilepsy for a number of years, and they are a truly exceptional organization in every respect. They are at the forefront of cutting edge Epilepsy research, and they have become a critical voice in the epilepsy community. They bring research to life and they connect families to relevant studies, all while remaining laser focused on their mission to cure epilepsy.
CURE Epilepsy's leadership is exceptional, and their transparency with donors is top notch. As a donor to the organization, I also cannot speak highly enough. In recent years, a family member became one of the 1 in 26 Americans who will develop epilepsy in their lifetime, and I find myself constantly reading their research updates and forwarding relevant findings and information to others. I feel informed, and I fully understand the impact my support is having. Thank you, CURE Epilepsy, for all that you do.
We've been working with CURE Epilepsy since 2019. Prior to that CURE Epilepsy was very much on our radar. We, at Epilepsy Canada, have a similar mandate - to find a cure for epilepsy and improve the lives of people living with this disorder.
As an industry Executive and having held an Executive position for 20 years, I've seldom met an organization that is so well managed and committed to their cause! Every person at CURE makes a difference. Every person at CURE is incredibly inspired to improve the lives of people living with epilepsy - nationally and internationally!
Based upon our experience working with CURE, we formed a Strategic Partnership. We felt that together we could make an impact in Canada as to the importance of finding a cure anywhere in the world.
CURE's commitment is not only in its organization, it's also mirrored and reinforced at the Board level. I can only add that CURE Epilepsy is an incredible team.
Gary Collins, CEO, Epilepsy Canada
CURE Epilepsy has been a major force in epilepsy since its inception. They are indeed a research-focused and patient-driven Nonprofit. My story with CURE Epilepsy dated back to 2019 when I received a $100,000 career transition "Taking flight" research award from CURE Epilepsy to identify novel rodent models and the genetic basis of diverse seizure outcomes. During the COVID-19 pandemic, CURE Epilepsy also provided extra funding to help researchers to conquer the unanticipated challenges due to the pandemic. CURE Epilepsy helps advance my career as I continue epilepsy research as an assistant professor in the Department of Neuroscience at Ohio State University. I truly appreciate CURE Epilepsy for everything they do, not only for supporting research but also for uniting epilepsy patients, their families and caregivers, doctors, and basic scientists to search for a cure.
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.
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.
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.
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.
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!
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.
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.
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)
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.
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!
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.