The Run of a Lifetime
by Samantha Macher
Washington, D.C., October 17, 2011— Imagine a crisp fall day in rural Middleburg, Virginia. Leaves of red and orange dangling lithely from their branches, cool air rushing down the sidewalk, briskly sweeping away the heat of the long summer days, your feet pounding against the pavement as you finish the tenth mile of your marathon training—
Autumn has finally arrived in the Washington, D.C. area. Gone are the dog days of summer, as the season gives way to beautiful fall foliage, hayrides, pumpkin carving and… running?
For athletes all over the country, the changing of the leaves is as much a hallmark of “running season” as it is of colder weather. In October alone there are upwards of sixty marathon races that are available for runners to test their strength, endurance and fortitude nationwide. Among these races, however, one stands alone as a challenge for our nation’s soldiers and civilians alike: The world-famous Marine Corps Marathon.
This year, the Epilepsy Therapy Project, located in Middleburg, Virginia, is a Charity Partner with this legendary race. In an effort to raise awareness for epilepsy and the urgent need for new therapies, ETP has put together a team of thirty-one dedicated runners who have volunteered to lace up their sneakers to run the race of a lifetime. But their race began long before the marathon started. While training for the event, each member of Team ETP was charged with raising $1,000 to help fund epilepsy research, a goal most of the runners have far exceeded. In addition to raising awareness in our mission to accelerate new therapies, ETP also hopes to call attention to Traumatic Brain Injury (TBI), a leading cause of epilepsy and a common malady facing our soldiers overseas.
Colin Powell stated in his 2011 Memorial Day speech that over 400,000 soldiers will return from Iraq and Afghanistan with some form of TBI, making them twenty-nine times more likely to develop epilepsy in their lifetime. In America today, roughly one percent of the population has a form of epilepsy, and nearly one third of those individuals suffer from uncontrolled seizures. At the Epilepsy Therapy Project, our mission is to accelerate ideas into therapies for people living with epilepsy and seizures. By joining together with the Marine Corps Marathon, ETP hopes to honor our heroes by helping the ones who have suffered these types of injuries. As Kevin Malone, ETP board member and parent of a son who has epilepsy due to TBI said in his address to the Institute of Medicine, “We need to be a country and a people who do not let those who have experienced head trauma end up with a hellish life… Epilepsy takes freedom from those who suffer from it. We cannot allow our citizens who have fought for freedom to lose their own freedom.”
When ETP first began their search for participants over six months ago, they were pleasantly surprised by how many people from across the country, and even as far as Costa Rica, answered the call. Their runners are a diverse group made up of parents, children, friends, and soldiers, all of whom have lives affected by epilepsy. Though these individuals might have chosen to run for different reasons, they have banded together as Team ETP; running for better therapies and better lives for people living with epilepsy.
One participant, Brandy Bartley, is racing for someone dear to her heart. “I am running the Marine Corp. Marathon in honor of my daughter [who] has battled epilepsy for almost 15 years...” She writes. “Sometimes Halle would have as many as 80 to 100 seizures a day…” Brandy’s daughter, Halle, has undergone five neurosurgeries in her eighteen years, as well as a “Vagus nerve stimulator implant, both the Ketogenic and modified Atkins diet, and countless number of medications…” none of which have proven to be effective in her treatment. But still, Brandy persists. “We don't stop fighting for Halle. We raise money, we work hard, we do what it takes to get new medicines and new therapies because we owe that much to Halle! Halle deserves a fighting chance and so does everyone else that has had to endure a seizure!!” Surely, Brandy’s fighting spirit will carry her through to the finish line on October 30th.
Another runner for Team ETP will show the world his strength during the marathon. “I had my first seizure when I was 17 …” Dylan Nelson tells epilepsy.com “[There] was a terrible fear that my that seizures would become a more frequent and scary part of my life. I've heard plenty of stories of people, including my dad, who have a few seizures in their teens that quickly spiral into seriously debilitating and constant bouts in their twenties and each of my seizures had come with fewer and fewer days in between.” Dylan began running a year ago in the hopes that it would improve his overall health and maybe even lower the number of seizures he was experiencing. “Since that day, I've run almost 600 miles, dropped 25 pounds, started graduate school, found a job I love, and haven't had another seizure.” While this isn’t the case for all people with epilepsy, Dylan’s is an inspiring story of perseverance in spite of incredible odds. “I am running the Marine Corps Marathon…because I want to challenge myself…and accomplish something that one year ago I would have never thought possible. More importantly, I want to raise awareness and money for those people who haven't been nearly as lucky as I have, people who need and deserve more recognition for their battle against epilepsy.” Excitedly, he concludes with an enthusiastic “Let's go run!”
Dave Scott, a seasoned marathon runner, will also be joining Team ETP and he is guaranteed to be a standout, even among 30,000 participants. “Dave will carry 3 ½ x 5 ft American flag the full 26.2 miles!” That is because Dave is not only a veteran runner, but he is a veteran of the United States Military as well. “At age 18, Dave enlisted in the US Navy to fellow in his father's footsteps as a Yeoman onboard an attack submarine.” This American hero, however, faced many struggles while following his chosen path. “…Dave's desire was denied when his physical revealed that he had recently discontinued use of medication for Petit Mal epilepsy.” But much like in his marathon experiences, his persistence paid off in the end. “Displaying true resiliency, Dave reenlisted five years later and successfully completed Navy boot camp… “ The Epilepsy Therapy Project is proud to have one of our soldiers run for them this year.
Training for a marathon takes months of painstaking discipline. Athletes run up to one hundred miles per week through blisters and fatigue, dedicating spare time and energy to preparing for those grueling twenty-six miles. Many go through three or more pairs of expensive sneakers before finding the one that carries them through their race. Some sustain injuries during the run after working for months to get there, and worse, some do not finish in spite of the most diligent efforts. Thankfully most, if not all, participants will have a community that supports them. That community picks them up when they fall, and encourages them always to try again. That community is invaluable for they are there to share in the runner’s joy when they finally do cross that finish line.
The struggle of the marathon runner is in many ways similar to the struggle to find effective epilepsy treatments. Like the training, it takes time, energy and passion. The people at ETP have dedicated our lives and livelihoods to “to make new therapies a reality for patients.” Like the sneakers, research and development can be expensive and take many tries before finding success. With help from our donors, ETP “provide[s] financial support… to promising new therapies, and invest[ing] in programs and platforms that can take time and costs out of new therapy development.” Like the runner, sometimes a therapy does not succeed no matter how much effort was expended. ETP will never give up. As co-founder and Chairman Warren Lammert says “The time is NOW…With your help, ETP can and will make those therapies a reality.” And finally, like the runner, ETP could not succeed without a community who supports them. The Epilepsy Therapy Project would like to thank their runners and all those who generously supported their outstanding efforts, along with NeuroTherapeutics Pharma, Inc., TeamEpilepsy.com, Sterling Foundation Management, and UCB, Inc., for sponsorship of the team and events surrounding the Marine Corps Marathon. ETP looks forward to the moment they share with all runners, friends and partners who have generously supported them when they finally cross their finish line with effective therapies for everyone with epilepsy.
Support TEAM ETP at the Marine Corps Marathon!
Become a part of our community: The Epilepsy Therapy Project is a 501(c) (3) non-profit organization whose mission is to accelerate ideas into therapies for people living with epilepsy and seizures. Founded in 2002 by a group of parents, distinguished physicians, and researchers, the Epilepsy Therapy Project supports the commercialization of new therapies through direct grants and investments in promising academic and commercial projects. For more information about epilepsy, epilepsy treatments, the epilepsy pipeline, and how to make a donation to ETP, please visit our website, www.epilepsy.com or call 540.687.8077