Motherly Love and Determination A Recipe for a CURE
Mother love is the fuel that enables a normal human being to do the impossible.
~Marion C. Garretty
When Susan Axelrod and several other mothers started Citizens United for Research in Epilepsy (CURE), it was more than just motherly love that fueled their mission, but an intense determination to find a cure for epilepsy.
Like many mothers of children with epilepsy, Axelrod has watched her daughter, from the time she was 7 months of age, suffer countless seizures a day. Now 24 years old, Axelrod’s daughter, Lauren, has been on every conceivable epilepsy treatment ranging from Phenobarbital to invasive neurosurgery. Although within the past few years they have been able to control her seizures with a mixture of anti-epileptic medications, the damage to her brain has been done.
In 1998, after 20 different medications, the ketogenic diet, vagal nerve stimulation and a neurosurgical procedure—all the while watching her developing brain deteriorate from uncontrollable seizures--I made a decision. I didn’t want anyone else to have to go through this. I decided that epilepsy needed the same research efforts as cancer and other better-funded diseases because I saw the devastating effects it had on my daughter and I knew its potentially life-threatening consequences. I wanted the suffering to stop, not just for my family but for all families. That’s when we started CURE,” said Axelrod.
Since its inception in 1998, CURE has raised over $3 million to fund research and other initiatives dedicated to finding a cure for epilepsy. CURE awards seed grants to young and established investigators to explore new areas and collect the data necessary to apply for further funding by the National Institutes of Health. To date, CURE has awarded over 30 research grants.
CURE recently hosted a Roast of Congressman Rahm Emanuel. Emanuel, a Democratic Congressman from Illinois, is a strong advocate of increasing federal funding for epilepsy research and epilepsy awareness and has focused specifically on funding geared towards Iraqi War veterans whose traumatic brain injuries are expected to lead to epilepsy in a large number of cases. Roasters at the Washington, DC event included: Senator Hillary Rodham Clinton, Senator Chris Dodd, Senator Barack Obama, Representative Tom Cole, Paul Begala,William M. Daley, and William Safire. The event raised $150,000 to be directed towards epilepsy research.
“Congressman Emanuel agreed to be the target of our ‘Roast’ because he is a such a staunch supporter of increased epilepsy research. He has really gone to bat on the Hill for federal funding for epilepsy research. The importance of epilepsy research is especially timely because so many of our soldiers experiencing traumatic brain injury have an increased probability of developing epilepsy as a result of the trauma to their brains,” said Axelrod.
When asked what is still needed to raise public awareness about epilepsy, Axelrod sighed and said, “One of the biggest misconceptions is that epilepsy is benign and easily treated. But the truth is there are so many people with intractable epilepsy, so many who cannot lead ‘normal’ lives. If we continue to portray epilepsy as a ‘non-problem’ why then would funding be directed towards finding a cure? What we truly need is a celebrity well-known by the media and politicians who can champion the epilepsy cause and bring the severity and prevalence of epilepsy out of the closet. With more attention on a national level we can increase our momentum in finding a cure.”
For more information about CURE please visit:www.CUREepilepsy.org