“We are the risk takers in the epilepsy research space.”
UNEXPECTED PATH
Susan Axelrod didn’t go looking for her career; it came knocking on her door, full force. The founding chair of Citizens United for Research in Epilepsy (CURE) has a deeply personal stake in the organization’s mission.
“When I was in business school I had a grand life plan, including the birth of my firstborn daughter. What was not in the plan—and what threw a lifelong curve ball at my family—was that she developed epilepsy at 7 months. And this wasn’t what you might envision when you think about epilepsy—a minor inconvenience, where drugs would control the seizures. This was epilepsy with a vengeance.”
As she and her family grappled with her daughter’s illness, Axelrod also saw the bigger picture and realized through connecting with other families that her situation was not unique.
“Fueled by the energy of meeting other people. I started to examine what was going on, how there can be so many people suffering. I found that there was very little money devoted to epilepsy research, and without more resources, it would be impossible to attract top-notch scientific talent to the field.”
PAVING A NEW PATH FOR A LONGSTANDING ILLNESS
“There was an enormous void, and I realized that someone needed to step in and mobilize patients, researchers, and our federal government. It’s an ongoing process to this day that requires vigilance, energy, passion, and resources.”
A trailblazer in an underserved field, Axelrod not only put a public spotlight on a little-understood illness, but also brought together scientists, medical professionals, and families in pursuit of innovative treatments and a cure. “In the epilepsy community, both in the patient population and the treating physician population, there was a complacency and an inexplicable willingness to accept the status quo,” she said.
Since Axelrod launched CURE in 1998, the organization has been at the forefront of epilepsy research, raising more than $43 million to fund research and other initiatives focused on a cure for epilepsy. CURE awards grants for young and established investigators and has funded more than 190 cutting-edge projects in 15 countries around the world to date.
The organization now boasts an internal scientific team of three accomplished epilepsy researchers who oversee and direct CURE’s research program.
Additionally, a Scientific Advisory Council of five national epilepsy specialists, along with 300 scientist volunteers lend their expertise to reviewing and evaluating funding opportunities
INNOVATE TO FIND THE CURE
With the success of CURE, Axelrod has helped lead a dramatic shift in the epilepsy research community from simply treating seizures to enhancing understanding of underlying mechanisms and causes, so that cures and preventive strategies can be found. CURE’s research program is cutting-edge, dynamic, and responsive to new scientific opportunities and directions through both investigator-initiated grants and unprecedented scientific initiatives.
“I was completely driven by my daughter’s story, and by the agony of watching the struggles of so many others with epilepsy and their families—but it came down to using what I had learned through my education and realizing that bold action was required. Nothing ventured, nothing gained.”
“We have changed the conversation in the field, we altered the direction and goals of the research community as a whole, and we remain the risk takers in this space. That is not to say that we aren’t diligent shepherds of our research investments, but we prioritize innovation and cutting-edge approaches, because it is the only way we are going to continue to bring about the breakthroughs required to transform and save lives.”
Susan L. Axelrod:
When I was in business school, I had a grand life plan, as all of us do. Everything was going according to that plan, including the birth of my firstborn daughter. And what was not in the plan and what really sort of threw a curveball at myself, my own plans, and my family's plans, was that she developed epilepsy at the age of seven months old.
Dan Lowenstein:
I first got to meet Susan as part of the planning committee charged with preparing for what was the first White House initiated curing epilepsy conference back in 2000. And I felt very lucky to be part of a committee that was thinking innovatively about a whole new way of presenting the challenges in epilepsy.
Susan L. Axelrod:
And so started to connect with people and realized that my personal situation was not the only one. I mean, I honestly thought my daughter was maybe the only one who was struggling this way. And fueled by that energy of meeting other people started to sort of look at this and say, what is going on? How can there be so many people suffering and so many people struggling and people losing their lives, and looked to the research that was going on in the area.
Dan Lowenstein:
I can't think of any other person that I've known in my entire professional career that has had as much impact on the scientific and sociopolitical landscape of epilepsy than Susan Axelrod.
Susan L. Axelrod:
There was very little research dollars invested in epilepsy at our federal agency, The National Institutes of Health. You can't make an impact on a disease without a pretty hefty investment of resources. Research is very expensive. When I looked at this, it was never with the thought that I could impact my own child's life. It was really about correcting a wrong that I saw.
Franck Kalume:
Working with CURE and with Susan is working with the brightest in the field. Her leadership style is proven to be very important in helping the field move forward and trying to find better solution for people with epilepsy.
Susan L. Axelrod:
It is not about my daughter, personally. It is about a need in society, and we can fill that need, and we can do it together. I think one of the greatest challenges I've faced has been how to—as a startup, how to grow it in a way where it's going to one day be self-sustaining, and it's not that this will ever stop being the main cause of my life. This award is a huge honor for me personally, and it's one that I never ever anticipated receiving. I think it's also an incredible recognition of the importance of this kind of work, this kind of venture. I am grateful for the opportunity to feel that epilepsy and research, in general, is of great importance to the university and to the alum of the university.
