The Epilepsy Foundation

I don’t believe I’ve really written about how much the Epilepsy Foundation has helped me over the years. I feel it may be about time to do so.

Since I was a child, I’ve been relatively involved with the Epilepsy Foundation. That said, I’ve never gone to Congress speaking on behalf of the Foundation, I’ve never run around doing massive fundraisers, but I’ve done what I could. As a 17 year old, I spoke to the health classes about what epilepsy is, how it is managed, and more importantly how there is no cure. Those in classes below mine understood, and I think walked away knowing some of what we go through.

The Foundation, manages to help more people than you could ever imagine on a very limited budget. When you compare cancer funding vs epilepsy funding, the numbers are staggering. I’ve included a copy of a Newsweek article to give you an idea.

The statistics are stark and sobering— and for the uninitiated (which is to say most of us), startling. Epilepsy in America is as common as breast cancer, and takes as many lives. A mysterious and widely misunderstood affliction, epilepsy is a disorder in which the brain produces sudden bursts of electrical energy that can interfere with a person’s consciousness, movements or sensations. Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents; one in 10 people will suffer a seizure in their lifetimes. By some estimates, the mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. Between 1 and 3 percent of the population will develop some form of epilepsy before age 75.

There is also a rise expected in the incidence of epilepsy among the veterans of the wars in Afghanistan and Iraq who have sustained traumatic head injuries. Yet public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis). It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern.

There is cause for hope. Science is unraveling more and more of the mysteries of the brain, and perhaps the source of the cataclysmic electrical storms of epilepsy will yield its secrets. Such, at least, is the aim of Sen. Edward M. Kennedy, who is considering a major bill to support enhanced research that will fund more work toward a cure, and of a resolute band of advocates that includes the man who sits nearest the Oval Office in the West Wing. White House senior adviser David Axelrod and his wife, Susan, are the parents of Lauren, a 27-year-old who began suffering seizures when she was 7 months old. Mrs. Axelrod, who contributes a piece in the following pages, is a founding board member and president of CURE—Citizens United for Research in Epilepsy. The group’s mission is clear from the acronym: to learn everything we can about epilepsy in search of a cure.

The reason Caroline chose to support the Epilepsy Foundation (and especially research) is because this isn’t just an American problem. Any funding for research brought in by the Epilepsy Foundation can help every person with epilepsy around the planet. Money makes the world go ’round, and without money the Epilepsy Foundation and other agencies have *no* chance of curing epilepsy. We, the ones who suffer from this disorder, will continue to live our lives around the numerous problems we face. We will suffer SUDEP, side effects, stigma associated with the disorder, and goodness knows what else.

Please consider giving. Please consider supporting this cause. Donate here, donate often, and show the world that you care

And that’s the end of my commercial broadcast. 🙂


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