March 11, 2005
Thank you David for that warm introduction. David is not only one of the most brilliant political minds in the business today, he is a loving husband, a committed father, and a dear friend who I've been honored to have by my side. Thank you David for everything you do.
I also want to thank Susan Axelrod and the entire leadership of CURE for allowing me the honor of speaking here this evening. As many of you know, Susan lives and breathes this organization, from the earliest hours of the morning until late at night, every day of her life. And I have no doubt that if the rest of us are willing to offer just a fraction of her level of passion and commitment to this cause, one day we'll be gathered here to finally celebrate a cure.
Since I first learned about this organization from David and Susan, I've often thought about the simple act of hope that began its journey.
I've thought about three mothers, sitting around a kitchen table, sharing the pain and the helplessness that go along with watching the child you love, the child whose happiness you live for, struggle with a disease that mom and dad can't fix. A disease that doesn't necessarily go away with the doctor's medicine, that isn't talked about most nights on the news, that isn't funded and recognized like a lot of the other diseases.
But then I also thought about how on that day, those three mothers said "no more." Maybe it was the memory of the first time they saw a seizure take their child to that lonely place where they could no longer reach them. Maybe they thought about the 2.5 million Americans who suffer from epilepsy, the tens of thousands who succumb to it, and the 181,000 more who will be diagnosed this year.
Or maybe as they sat around that kitchen table, three friends living similar experiences, they simply realized that there are some challenges in life you can't take on by yourself. That there is power and strength in the ability of a community to make a difference. And that as that community reaches out and grows and finds its voice, so grows the hope that it will someday find a cure.
Well, seven years, thirty research grants, one White House conference, and over $3 million in donations later, I can see tonight that the kitchen table has become a lot more crowded and that this community is on its way.
And yet despite all the progress, the question still weighing on your minds is, "how do we get all the way there?" How do we get all the way there when, despite the fact that epilepsy affects more Americans than Parkinson's, multiple sclerosis, muscular dystrophy, and cerebral palsy combined, it still receives far fewer federal research dollars than any of these diseases? How do we get there when too many policy makers and too much of the public still think that epilepsy is, as Brendan Malone told us in the video, an "inconvenience," rather than a serious, and possibly deadly disease?
I think that we get there the same way that so many of you got us here - by continuing to share your stories and your children's stories with the faith that more and more Americans will open their hearts to listen. With the faith that if there's a little boy who can't sit through a class without suffering the pain and uncomfortable stares that accompany a seizure, it matters to every mother, even if it's not her son. That if there's a young woman who can't work and can't take care of herself and can't have children of her own because of the brain damage caused by epilepsy, it matters to every father, even if it's not his daughter.
Personally, I can't begin to imagine what a parent who has a child with epilepsy goes through on a daily basis. But I know what it's like to be a parent. And as a father with a little girl who suffers from asthma, I can understand the terror you feel when your child wakes you in the middle of the night gasping for air. When you would rather stop breathing yourself if it meant that she could start breathing just a little easier.
In this way, your stories touch me as both a father and a friend, and I will leave here tonight having adopted your cause as my own, as so many have done before me. I will go back to Washington and work with my colleague Rahm Emanuel and others to demand more federal funding for epilepsy research.
But I also believe that if each of us walks out of here and tells the story of the 2.5 million parents, brothers, sisters, daughters, and sons with epilepsy, it will touch others who may not understand this disease, because they are mothers and fathers and friends too. And as they embrace our cause, we will expand this community of concern until there isn't any room left in this country not to listen.
This has been the story of CURE ever since its founding - the inspiring idea that those of you who have dedicated so much of yourselves to this cause are doing so knowing full well that a cure may not arrive in time to heal your loved ones. And yet, you continue fighting with the hope that you may spare a nameless face the pain your families have known. That kind of compassion is heroic, and it is the kind that will eventually defeat this disease.
We need this victory now more than ever because today, we face a new threat in the potential spread of epilepsy to thousands more Americans. Just last week, USA Today reported that hundreds of U.S. soldiers are returning from Iraq with a condition known as traumatic brain injury, or TBI. Even though new technology and better body armor are helping them survive bomb and rocket attacks, the blasts are still causing these soldiers brain damage. As of January, 437 cases have been diagnosed in Army hospitals alone, and some doctors are saying that it could become the "signature wound of the Iraq war."
As some of you may know, TBI is the greatest risk factor for developing epilepsy. In fact, a study of Vietnam vets showed that 51 percent of those who suffered TBI went on to develop the disease.
We have asked these brave men and women to leave their homes, leave their families, and fight for our freedom on the other side of the world. And now we are finding out that when they come home, they may develop a life-threatening, debilitating disease that this country has not done nearly enough to treat. We simply cannot tell our heroes that when it comes to dealing with TBI or epilepsy, they're on their own. I know CURE won't, and I will go back to Washington and make sure the federal government won't either. I plan to work with my colleagues in Congress to provide the VA with the funds to research TBI and epilepsy so we can learn more about the disease and develop better tools to care for our heroes. These soldiers have moms and dads waiting for them at home, they are a part of our community, and we will speak for them.
I know that a lot of you have been struggling with epilepsy for a long time now, and that you've seen both good days and bad. On the bad days, it may seem like salvation will never come, that parents and children will be suffering with this disease for decades to come.
But I think we find hope by remembering that we've been here before. That there was a time when America watched helplessly as a mysterious disease left thousands - especially children - disabled for life. And just as it seemed that no one was paying attention and nothing could be done, a community of compassion awoke and led a March of Dimes to find the cure for polio.
Organized with the help of Franklin Roosevelt and backed by the federal government, the March of Dimes galvanized a nation to conquer polio, dime by dime. And while Roosevelt knew that his own polio would never be cured by the discovery of a vaccine, he also knew that at its best, government can be used a force to accomplish together what we cannot achieve on our own.
And so the people began to care and the dimes piled up and the funding started to flow, and fifty years ago next month, Jonas Salk discovered the polio vaccine.
I know that we don't have a President with epilepsy, or a major celebrity spokesperson, but we do have a growing community that is on the march. We have allies in government who know that we can defeat this disease if we work together. And we have the hope that every parent has for their child.
The hope you have the first time you bring them to the doctor's office, and you just want them to walk out with some medicine and a lollipop. The hope you have the first day you watch them get on the bus, when you want them to fit in with the rest of the kids and do well in school. The hope you have the day of their first job, when you want them to call you and let you know how great it went. The hope you have when they walk down the aisle, when you want nothing more than for them to find love and happiness in life.
These are hopes we hold not only for our own children, but for every parent and every child every where. And if we leave here tonight determined to turn those hopes into action, into a sustained commitment to fight epilepsy that's more than just about one fundraiser or one benefit, we will find a cure and we will keep hope alive for millions of families for generations to come. Thank you, and God Bless you.