MainStreet is on a mission to find the charitable organizations most worthy of your donations. We focus on their effectiveness and the amount of money they budget for actual good deeds, as opposed to that which goes to overhead.
This week we’re looking at Citizens United for Research in Epilepsy, or CURE.
CURE, has been working since 1998 to fund research projects in the hopes of finding a cure for epilepsy.
Who they are and what they do: Based in Chicago, CURE is a volunteer-based organization founded by parents of children with epilepsy. CURE raises funds for research and increases awareness of the prevalence and devastation of this disease, which is more common than many people realize.
“Epilepsy is as common as breast cancer, and takes just as many lives,” says CURE executive director Michelle Marciniak. “It affects over 3 million Americans, and can develop at any age. It is one of the most common and severe neurological conditions in the U.S., causing seizures, loss of consciousness and, for some, brain damage and even death. Most people do not realize that epilepsy can be so devastating—40% of all patients continue to have seizures even with the best available treatments.”
The organization feels it is filling an important void. “For those Americans whose seizures cannot be controlled and the tens of thousands of lives lost every year, a higher priority must be placed on investing in the scientific research at the NIH [National Institues of Health] that can lead to prevention and, ultimately a cure for epilepsy,” says Marciniak, adding, NIH "lacks the appropriate funding to take on the basic, translational, clinical and multidisciplinary research needed to accelerate the discovery of better treatments and a cure for epilepsy.”
CURE has also recently been active in helping veterans with brain injuries. “In the current wars of Iraq and Afghanistan, the ‘signature wound’ is traumatic brain injury, of which epilepsy is a common long-term consequence,” says Marciniak. “Referred to as post-traumatic epilepsy, it is a serious and long overlooked problem for our injured soldiers. Remarkably little is understood about PTE. In both civilian and non-civilian populations, head injury is known to put a patient at high risk for development of chronic seizures, and still there is a lack of research focused in this area. In addition, frequently patients with PTE have seizures that do not respond to available treatments. “
“In 2005, CURE formed its first-ever targeted research program, in partnership with the Department of Defense, to direct funds to research on epilepsy related to traumatic brain injury,” Marciniak says. “In addition, CURE advocated for the introduction of legislation in order to establish Veterans Administration Epilepsy Centers of Excellence.”
CURE reps are optimistic about some promising recent developments in the field of epilepsy research. “The number of studies aimed at understanding how and why epilepsy develops has increased substantially, and researchers are banding together in collaborative efforts to overcome the limitations of individual research,” Marciniak says. “Researchers also have identified a number of genes associated with epilepsy. Many technical advances, from improved brain imaging to the widespread use of microarrays, are allowing new insights. Partly as a result of these advances, a variety of new anti-epileptic drugs and other treatments are now being tested in clinical studies.”
How they spend your money: Since its inception, CURE has raised more than $9 million to fund epilepsy research and other initiatives. The group spends more than 95 cents of every dollar on programs and services. They key to that impressive figure?
“We are fortunate to have an amazing group of volunteers and interns who donate their time and effort to us on a weekly basis,” says Marciniak. “In addition, numerous individuals and corporations provide us with generous in-kind donations.”
How to donate or volunteer: CURE welcomes donations and volunteers willing to help raise awareness about this issue. Visit their web site for more information.
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