This Research Funder Is on a Mission to Cure — and Destigmatize — Epilepsy

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CURE Epilepsy (CURE) was founded in 1998 by a group of parents of children with epilepsy — a disorder in which nerve cell activity in the brain becomes abnormal, causing seizures — who were frustrated with the state of treatment. “There was this idea that you could just ‘live well’ with epilepsy, and that was just not an acceptable option,” CEO Beth Lewin Dean said. “There needed to be research to find cures and not just learning how to adjust your life to seizures.”

Formally named Citizens United for Research in Epilepsy, CURE had $6 million in total revenues and disbursed $3 million in grants according to its most recent Form 990 for the 2021 calendar year. It received $6.2 million in cash contributions for the year, $4.6 million of which came in the form of non-government grants, gifts and revenues from fundraising events. Since its inception, CURE has raised more than $90 million to fund research and has awarded over 280 grants to organizations in 17 countries committed to searching for a cure, eliminating treatment side effects, and reversing health impacts caused by seizures.

While the field has made meaningful progress in recent years, the condition’s inherent complexity continues to inhibit researchers’ ability to devise standardized treatment protocols. “We have over 40 anti-seizure drugs, and if you get diagnosed, you’re prescribed one to see if it works, and if it doesn’t work, you try another, or you try a combination,” Lewin Dean said. “A cure is obviously the holy grail, but until then, we need better data on what’s the most effective option for a given situation and what’s the second-best choice.”

CURE also has a footprint in the advocacy space. It played a key role in supporting a 2012 Institute of Medicine report, “Epilepsy Across the Spectrum: Promoting Health and Understanding,” that identified gaps in epilepsy knowledge, care and education, and called for immediate action. CURE has also launched awareness campaigns to remove the long-held stigma associated with the condition. “People still say ‘generalized seizure disorder,’” Lewin Dean said. “They still dance around the issue because they won’t want to use the word.”

A deeply complex field

Neuroscientist and Chief Scientific Officer Laura Lubbers is responsible for developing the organization’s research strategy and overseeing and implementing all research programs. Growing up, her sibling had epilepsy and her mother eventually developed the condition. “I certainly understand the family and societal implications, and the need for research,” she said.

Lubbers told me that the biggest challenge facing researchers in the field is tackling the condition’s multiple layers of complexity. Individuals can develop epilepsy in various ways, such as genetic mutations that start very early on in life, or through traumatic incidents to the brain, like a fall or a car accident. “We’ve made a lot more headway when it comes to genetic discoveries,” she said, “but there’s still a very broad range of individuals that have epilepsy due to other causes, and finding solutions for them can be difficult.”

Or consider the fact that there are multiple kinds of epilepsies — pediatric epilepsy, post-traumatic epilepsy, treatment-resistant epilepsies, sudden unexplained death in epilepsy, and sleep-related epilepsy — each of which bring its own set of demands. Further complicating matters is the fact that an individual can have multiple seizure types, “so you can’t necessarily address this type of seizure with this treatment because the individual is experiencing multiple types,” said Debby Hecht, CURE’s senior director of marketing and communications.

This broad spectrum of seizure types stymies researchers’ efforts to develop effective treatment options. Of the 3.4 million people in the U.S. have epilepsy, a third do not have adequate seizure control. “That means that over a million people cannot control their seizures with the myriad of drugs out there, and those who have control often experience a decreased quality of life because of the side effects of the medication,” Lubbers said.

CURE grant offerings include the Cure Epilepsy Award, which seeks to “truly transform the lives of those affected by epilepsy, with prevention and disease modification as critical goals,” and CURE’s Catalyst Award, which supports the “nimble development of data necessary to advance ideas towards commercialization funding opportunities.”

Tackling stigma

I spoke with Lewin Dean, Lubbers and Hecht to gather material for an upcoming IP white paper on the state of funding for neurological research organizations. One of the insights from the process is the extent to which high-profile individuals double as the “face” for a specific neurological condition. A high-profile figure can go a long way toward bolstering understanding and financial support, but not all causes have such a representative.

After publicly sharing his Parkinson’s disease diagnosis in 1991, Michael J. Fox launched the Michael J. Fox Foundation for Parkinson’s Research in 2000. With approximately $353 million in revenues, it’s now one of the biggest funders in the neurological research field. The Christopher & Dana Reeve Foundation, whose namesake is the “Superman” actor who passed away in 2004, is a major player in the field of spinal cord research.

“People are more comfortable having discussions about conditions like Parkinson’s and autism,” said Lewin Dean, who joined CURE a little over three years ago. “I do think having a prominent spokesperson helps.” And yet, epilepsy doesn’t have a deep bench of high-profile advocates, despite the fact that over 3 million Americans have the condition. Why?

“Many individuals choose to hide their epilepsy because of people’s discomfort and the lack of understanding about the condition,” Lewin Dean said, noting that this ignorance has been partly shaped by the long-held belief that epilepsy is a supernatural or even demonic disorder. Lubber concurred. “Epilepsy has a particular stigma about it,” she said, “and this impacts our ability to raise funds for research.”

Last spring, advocates were encouraged by news that Ohio State University quarterback Justin Fields told NFL teams that he had epilepsy and was managing the condition. “With Justin being open and talking about the fact that you can live a full life, you can play sports and do these things, it’s huge for the community,” Lewin Dean told the Chicago Tribune’s Steve Johnson. Fields was subsequently drafted by the Chicago Bears and is currently the team’s starting quarterback.

That said, society still has a long way to go. Lewin Dean told me that outlets covering Field’s announcement used the term “seizure disorder” instead of “epilepsy.” Similarly, Hecht hears about doctors who say “generalized seizure disorder” out of fear of upsetting the patient. “The doctors don’t want to stigmatize it,” she said, “but that’s doing the person living with epilepsy a major disservice in terms of treatment and managing risks.”

CURE recently launched the #SayEpilepsy campaign, collecting stories of individuals explaining the importance of saying the word. “We can’t fund research to find a cure for, raise awareness about, or fight the stigma against epilepsy if we don’t use the word,” the site reads.

Promising developments and what’s next

The epilepsy research field has made significant strides in recent years. Advancements in imaging now provide doctors with a better understanding of where seizure activity is occurring, leading to more targeted and effective treatments. Researchers also believe that the future development and accessibility of precision therapies could yield significant breakthroughs.

In addition, basic and translational research into epilepsy can overlap with other neurological conditions like Alzheimer’s and Parkinson’s disease, cancer, depression, migraines and bipolar disorder. “There’s a lot of interconnectedness and comorbidities, and when you fund this kind of research, you sometimes get findings that you didn’t expect,” Lewin Dean said. Her thoughts echoed the sentiments of Kavli Foundation Life Sciences Director Amy Bernard, who told me recently, “there’s a very short distance to applying it [basic neurological research] to any number of different clinical areas, including Alzheimer’s and Parkinson’s disease, of course, but also things like basic cancer.”

Looking ahead, Lubbers noted that integrating disparate health records into a common framework “could be a rich source of information to help guide us on treatments, especially for early life epilepsies where families are looking at a lifelong journey.” CURE is prioritizing the development of “common data elements” for specific epilepsies to allow researchers to access standardized data across the spectrum of research. This work could yield treatments that would put an end to doctors’ current scattershot approach to treating patients with multiple seizure types.

CURE also plans to ramp up efforts to provide care, including telehealth services, for disproportionately underserved populations. “We need to provide more energy and funding to people who are struggling, so it doesn’t matter if you’re on the south side of Chicago or in the middle of Nebraska,” Lubbers said.

Addressing the “I want it now!” syndrome

Hecht and her team are working with financial services firms Vanguard and Fidelity to educate DAF managers about the organization so that they’ll recommend CURE to donors. This development steered our conversation to the perennial challenge of engaging donors around basic research, and with it, the movie “Willie Wonka and the Chocolate Factory” (naturally).

In the film, the petulant child Veruca Salt sings, “I want it now!” after Wonka refuses to sell the golden goose to her father. Hecht sees some similarities with donors who expect their support to generate immediate breakthroughs. “I sometimes see that ‘I want it now!’ mentality, but basic science is the backbone, and if you don’t have that, you’re not going to get the cure.” This is another common refrain among folks I’ve spoken with while researching funding for neurological and cancer research — basic science paves the way for breakthroughs.

In CURE’s case, Hecht and her team work with researchers to craft “impact stories” to show funders how their support for basic research led to measurable outcomes. “We’re coming up on 25 years, and we’re now in the position to say, ‘It’s been years in the making, but look what it’s allowing us to do,’” she said. “We are selling hope, but we want hope to translate into something real. We have to make people understand that with their support, hope becomes tangible.”