Epilepsy Therapy Project is proud to be a Charity Partner for the 2011 Marine Corps Marathon (MCM). It is our privilege to share the stories of our TEAM ETP runners. To support TEAM ETP, visit our website TEAM ETP – MCM Fundraiser
Flor Amaya | Stephanie Appiah | Brandy Bartley | Aaron Casavant | Jackie Clark |
Carlos Diaz | Michael Gantz | Christy Holly | Kristel Jacobson | Tristan Jones
Dina Kalina | Patricia McElroy/NTP | Dylan Nelson | Susan Nelson | Scott Nunziata | Christine O'Leary
Misty Phillips | Aidan Preston | Jerry Preston | Michael Quesnel | Amy Replogle
Erick Rodriguez | Laura and Dan Ruhls | Dave Scott | Sean Sibson | Joe Silburn
Heather Spratt | Heather Stanley | James Vacek | Eileen Warren | Jeremy Wheeler |
To support Flor, visit her page
In August of 2010, I began my first teaching job. I was a building substitute at a Charter School in Philadelphia. I took over for teachers on maternity leave, sudden absences, and whenever someone couldn't get to work on time, I stepped in to help.
Amanda*, one of the teachers who I covered for most often really inspired me to be a part of this project. I first was the replacement teacher while she was on maternity leave for 6 weeks, but my time with her students was extended because of the sudden onset of seizures.
Amanda is one of the best teachers that I've ever met. She constantly strives to engage her students, creating whole lessons from scratch, but seizures slowed her down. Even after my time as a substitute ended, she was out multiple times in the spring, having more and more seizures. Her little girl was cared for by her husband and her mother, while she had repeated, extended visits to the hospital.
As I train for this marathon, I keep Amanda in mind. Like so many others, she works extremely hard, and is doing her best to keep her family together, even as seizures, and that constant fear in the back of our minds keeps growing.
Please donate to the Epilepsy Therapy Project. I am looking to raise a $1,000, so I can run for Amanda, and keep hope alive for others with Epilepsy.
*I have changed her name to protect her privacy.
I am running the Marine Corp. Marathon in honor of my daughter Halle and all of those who have had to endure being held hostage by a seizure...even one is too many! My daughter has battled epilepsy for almost 15 years...since she was just three years old. Sometimes Halle would have as many as 80 to 100 seizures a day~ making everyday tasks completely dangerous and impossible! Surgery at Johns Hopkins stopped my daughter's seizures for 20 months and we thought we would never have to see Halle have another seizure ...then in the middle of night another seizure tore through her brain and body...leaving us all speechless and scared...we had been through 5 brain surgeries, Vagus nerve stimulator implant, both the Ketogenic and modified Atkins diet, and countless number of medications (with Halle being allergic to most of them)...so where do go from here? We don't stop fighting for Halle. We raise money, we work hard, we do what it takes to get new medicines & 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!!
So PLEASE help me with my mission to run the Marine Corp. Marathon by raising $1000 for the Epilepsy Therapy Project! I will do the training and running of the marathon...the 26.2 long miles~ and all you have to do is donate a little or a lot...every penny counts!! Are you with me?
My whole world changed the day that my daughter, Liza, had her first seizure. She was a little over three months old. I was in a law school class when I got the frantic phone call, and I had to have a friend collect my notes, textbook, and briefcase because I left in such a hurry to meet Liza and my wife, Candice, at the hospital. The next several months were a dizzying combination of more seizures, long hospital visits, medical testing, and generally becoming acquainted with the effects of epilepsy on infant. Much to our dismay, her neurology team could not give us a diagnosis despite the months of hospital visits and testing. Liza continued to have seizures lasting anywhere from one to five minutes until the Diastat stopped them, and Candice and I were at our wit's end trying to raise our two-year old son, Calvin, take care of Liza, finish law school, and begin studying for my bar exam. They were among the darkest months of my life. Fortunately, we were surrounded by a loving network of friends and family who helped make life more bearable. Finally, in March 2010, her neurologist at CHKD ordered some genetic testing, and, after several weeks of waiting, he called with her diagnosis. Liza had a de novo genetic sodium ion channel mutation that was producing her seizures.
My heart broke on that phone call. Genetic? As in you can't ever fix it? Unfortunately, her neurologist couldn't provide us with much more than the diagnosis. As we learned more about her condition, we discovered that the range of outcomes for a de novo channelopathy is very broad. Unlike some other genetic mutations, there is no defined set of short or long-term effects. Liza could make it through her diagnosis with relatively minor effects such as only febrile seizures, or she could deteriorate rapidly into very serious epileptic conditions that have long-term impacts on health, behavior, and development. All we could do was hope and pray for the best possible outcome and prepare for worst. Her neurologist told us that ages one through five seem to be the critical zone for someone with a Liza's diagnosis, and that we should do our best to keep her healthy, well-fed, and well-rested. So we do our best. She takes two medicines twice a day, Diazepam when she gets sick, we have Diastat in case of a seizure, and she gets regular speech and motor therapy sessions. So far, her only seizures have been febrile; it seems that if we can control the fever with ibuprofen and Tylenol, we can reduce how many seizures she has.
I'm happy to report that our strategy seems to be working. Liza hasn't had a seizure since February 7, 2011, and Candice and I are very encouraged by her development (which is a little behind, but not too far). We recognize that we've been very fortunate so far and are very thankful for that. She's the sweetest little girl, and we love her very much. I'm running the Marine Corps Marathon with the Epilepsy Therapy Project because epilepsy hit very close to home for us. We weren't expecting it. We weren't looking for it. And then our daughter was diagnosed with it. Other families are in similar situations, and they need to get the support that we've been fortunate enough to enjoy from our neurologist, medical team, pediatrician, friends, and family. The Epilepsy Therapy Project can do help them get it.
Epilepsy is frustrating, it is depressing, it is scary, it makes you angry and cry till you can't stop. Epilepsy takes a piece of your heart every time you experience a grand mal seizure. It keeps you up at night wondering if it will ever go away, will the seizures ever subside, will the worry ever stop.
I don't have epilepsy, but my 19 year old daughter Sage does and I can't imagine what it is like for 3,000,000 people in the U.S. alone. Not only does this disease effect the person who has it but it also tortures their family and friends.
Sage was diagnosed at age 9, but probably has had epilepsy since she has been three. As she has gotten older her seizures have gotten worse. In 2007, she had two grand mal seizures; in 2008 she had two more. Then in 2009 they increased to six and 2010 another six more. Sage is unlike all other 19 year olds, she cannot get her driver's license, she needs 8-10 hours of sleep a night or she has a seizure (not easy for a college student), she doesn't know when or where the next seizure will be, she is on two different medication which make her lethargic and her seizures have still have not stopped. She deals with all without complaining or wondering why her, I should take some lessons from her and appreciate what we have and stop worrying so much. She takes it all in stride and makes the best out of it. Sage is an amazing, sweet, loving person and I pray someday day she could live without medication. The doctors that we have gone to can't find the right medication for her. It is all trial and ERROR!
As a parent I feel so helpless, we are supposed to be able to protect our babies from everything. I just have to sit helplessly and watch as she has a seizure. There is nothing I could do to help and it crushes me. So when I got an email from the Epilepsy Therapy Project about running in the Marine Corps Marathon; I was ecstatic. I love to run and was planning on doing the NYC Marathon in November to try to beat my PR of 3:16 but how could I pass this up! My only concern was if I could finish, not because of the mileage, because I have done numerous marathons before, but for the fact that I will be so proud and honored to be running for just an awesome cause I'm not sure I could stop the tears from coming the whole way. Please help this awesome cause and support me in my run in any way you can.
To support Carlos, visit his page
To support Michael, visit his page
To support Christy, visit his page
To support Kristel, visit her page
To support Tristan, visit his page
It was a year ago this past Memorial Day weekend that my husband, kids and I were enjoying a long weekend with my husband's brother David, his wife Megan, and son Nathan in Seattle. David had just finished a six-week training session for the Army Reserves at Fort Lewis, and we were all looking forward to a weekend spent exploring the city together. Nathan, who was 3 at the time, was eagerly anticipating a fun reunion with his dad. We were all visiting a very busy Pike Place Market one afternoon, when I turned around to make sure we were not losing them in the crowds. That is when I saw Nathan crumple to the ground. The first thing that ran through my mind, having two young children of my own, was that he was tired of walking and decided to be stubborn and stop in his tracks. Immediately though, I could tell by Megan & David's faces that it was much more than that. I asked if everything was okay, and the response was that Nathan's teachers had witnessed this, but they themselves had not before this episode. Nathan was bright, affectionate, healthy and energetic. He had friends at school, he learned quickly, and he was such a joy to interact with. According to his parents, he was also a bit of a klutz, so it came as no surprise when his daycare reported a few random instances of him falling down or falling out of a chair. Was he tired, did he trip on something, did he faint? The most confusing clue was the completely blank look on his face when he went down to his knees. However, with a history of seizure disorders in his mother and grandfather, his parents became a bit more vigilant.
Returning home, Nathan was immediately taken to his doctor where they agreed a workup was needed due to the family history, but his doctors weren't in any hurry.
A week later, the day Nathan moved up to a new classroom, was the day his life took a dramatic shift. First a random collapse, then a few hours later his first Grand Mal seizure. Everyone was terrified and shocked by this development. Nathan spent the day in the ER, being a fantastic patient (as long as the popsicles kept coming) and undergoing numerous tests. The seizure workup was moved up and the family returned home, albeit holding their breath a bit. The next day brought more Grand Mals, and the next even more. Finally a diagnosis was made: Nathan had Myoclonic Astatic Epilepsy.
Well known as a difficult-to-treat form of epilepsy, the family returned home – stunned. How bad was this going to get? Was Nathan's future now a foggy haze of what had been dreamed of for him? Days of seizures continued until finally the medications began to work…and so the roller coaster began. Two weeks of peace followed each medication adjustment, followed by a sudden and severe increase in seizures. More medications were added, more seizure types manifested themselves…and of course, the awful side effects such as ADD, tiredness, loss of appetite. Each medication change brought new hope that was eventually dashed weeks later. A hockey helmet was added to the mix, and Nathan was sent back to daycare, fingers crossed that he could continue with some sense of normalcy.
Nathan's 4th birthday, and the multiple seizures that day brought, was a stark indicator of how his fourth year would go. Seizures increased and medications helped less and less. A stringent diet was attempted but made him very sick and did not help the seizures. He was on his third Neurologist and the family was losing hope. Eventually he was asked to leave his daycare…the one place where he had friends. His epilepsy was consuming his life.
As the weather turned gray and bleak, along with Nathan's outlook, the family took a chance on a new doctor. He was aggressive and made suggestions that the family wasn't ready for, but they trusted him. Medications were added, for a total of four at once. Seizures were well over 100 a day. Nathan had entered a new school and was receiving wonderful care, but continued to slip away. He became lethargic and nearly non-communicative, rarely smiling or interacting at all. The children at his new school feared him – this boy who wore a helmet and facemask and whose speech could not be understood.
Finally, summing up all their courage, Nathan's parents elected to have a Vagus Nerve Stimulator implanted. It had as good a chance as any medication, and was really their last hope. A fifth medication was added first, and small improvements were witnessed. The surgery was performed and everyone waited, holding their breaths in the hope the seizures would stay away for a while.
Today, Nathan is approaching his fifth birthday and has been seizure-free for over a month. He is "the new Nathan"…extremely energetic, even more affectionate, and quickly recovering his lost cognitive abilities. The "old Nathan" could be easily forgotten as a bad dream, but we all continue to hold our breath a bit…hopeful yet vigilant that the seizures may return. Through it all Nathan has been so strong and has showed incredible endurance. He has a better understanding of what has happened, and knows it's the "Power Pack" in his chest that helps make him feel like a superhero.
Superhero, indeed. Like all parents, my main concern is for my child's health and safety. I can't even begin to imagine the struggle the past year has been for Nathan, but also for David & Megan, who had absolutely no control over their child's health or safety. The brain and its power are miraculous, but it can also be quite frightening. I know all too well the havoc the brain can wreak on a body, with a niece who has recovered from epilepsy, a grandfather who passed away with Parkinson's disease, a grandmother who passed away with Multiple Sclerosis, a mother who struggled with mental illness her entire life, and a brother living with MS.
In gratitude for Nathan's progress, and hope for future research on the brain that will help millions of Americans suffering from epilepsy and other neurological conditions, I am committed to team ETP and the Marine Corps Marathon. I invite you to join the fight with me!
To support Patricia, visit her page
I had my first seizure when I was 17 on the first day of spring break. Light rain followed a slow drizzle down the blurred glass of our kitchen window while I cooked ramen noodles on the stove and started to feel the same things I had had for years leading up to ear-splitting migraines. Fuzzy vision. A weird feeling that all my senses were heightened. And, luckily, an urgent need to lie down before the pain arrived.
But this time it was different. I started to hear a driving rock song that, I would later find out, was just "in my head". I tried to turn off the stereo in our living room, but it was already off. In another stroke of luck, I put down the boiling pot of noodles before I promptly passed out and began my first grand mal seizure draped over, in an even luckier moment, the cushy backside of our living room couch.
I certainly wasn't expecting to have a seizure, but it wasn't a total shock given that my dad experienced dozens of epileptic seizures in his life, mostly in his 20s. My mom had taken care of my dad then and 20 years later saw me have my first seizure.
My second seizure came 4 years later while lying in my dorm room bed. In a moment of particular serendipity, my friend Tom who lived in the adjacent room heard me and ran in to pull me away from the dresser that I had been banging my face against. The third seizure was 10 months later in a laundromat… I fell on a pile of clothes. Eight months later on May 27th, 2010, I had two seizures on the same day, both in the presence of a new coworker who happens to moonlight as an EMT on the weekends.
Two things hit me that day.
The first was a terrible fear that my epilepsy was getting worse and 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.
The second thing that crystallized for me on May 27th, 2010, was just how – for lack of a better word – stupid-lucky I've been to have been surrounded by kind souls and cushioned surfaces during each my seizures.
I started running last November as part of a general effort to take better care of myself after my two-seizure day. At first, it was just about the exercise, but I quickly found an amazing group of people that I loved running with. They keep me motivated, accountable, and make the running enjoyable, even as the temperature in Washington, DC flirts with 100 degrees. 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.
I am running the Marine Corps Marathon with the Epilepsy Therapy Project (TEAM ETP) in part because I want to challenge myself to continue to run and keep healthy throughout the brutal summer months, 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. Thanks, ETP, for having me. Let's go run!
My beautiful Anna....6 years old, in first grade, a budding gymnast and an intelligent little girl. I receive a call at work from her school- "Anna had a seizure". Little did I know that this would be a phrase that I would be hearing for the next 4 years. After many painful studies, blood tests, etc., Anna was diagnosed with "Benign Occipital Epilepsy", a disease I now know way too much about. Four years, 2 doctors, and 10 medications later (one that we have to get from Canada because it isn't even approved here yet!), taking 9 pills a day and never complaining, Anna is still having seizures. Not as frequent or as severe, but still occurring. She was a gymnast in level 6, but had to quit the team. She has started recreational gymnastics again; baby steps...
Anna does not let this horrible disease get her down. She hates the word "seizure" (as do I!), and even if she "has one" in school, she never wants to leave and just wants to be a "normal kid". But she is not; my Anna is very, very special...
To support Scott, visit his page
To support Christine, visit her page
Epilepsy changed the lives of our entire family. My son Lucas was 11 years old when he had his first seizure in the early morning hours of Christmas Eve 2009. We awoke when heard a loud crash from the back of the house and found our son on the bathroom floor. I'll never forget the look on my husband's face as we stood over Lucas -- "What is this?!" "What's happening?!" "What do we DO?!" We spent the whole day in the hospital - after a battery of tests including an EEG were performed. Everything came back normal and we were released to go home and enjoy Christmas with our family. At that time we were hoping the seizure was a one-time thing and life returned to normal.
A second seizure followed in June of 2010. This time my husband and I were on the other side of the country in Colorado on a short vacation. It was early morning when I got the call. I again felt terrified and helpless as we rushed to the airport to get an emergency flight home. At this time we were given the option to begin medication to control the seizures. We went for a second EEG - everything came back normal again so we consulted with our doctor and decided not to treat the seizures with medicine…yet.
At 3 a.m., August 3rd, 2010 my son had 5 seizures - about one an hour. I was shocked when they kept occurring. I called our doctor and he arranged for us to be admitted into the hospital. It was during this time that I realized our lives were not going to be the same again. We started medication that day and have dealt with terrible side effects: rage, depression, anxiety, bi-polar disorder and memory loss. There were times during the first few weeks that it felt like our entire family was falling apart. Lucas was not able to get along with his younger sister at all and it seemed like to say that we had a rough time is an understatement. I started a journal and wrote down everything I could remember about the seizures and I spent countless hours doing research online to prepare myself for our appointments with the neurologist to make sure I was doing everything I could. We had an MRI and it the results were normal. I felt so very frustrated - seizures for no reason? At some point - I think it was November - the neurologist told me that I had done everything right and now it was time to let the medicine do its' job and to stop worrying. She diagnosed Lucas with Partial Complex Seizure Disorder and Migraine Headaches. I left her office feeling a little better but still wanting answers that have yet to come.
Since that time I have been wanting to DO something for my son and for others living with seizure disorder. I have been a runner for over 20 years. I used to run cross country in high school and have run several 10K races. This past winter I spent hours on the treadmill running and watching my cell phone out of the corner of my eye. I worried the school was going to call any time to tell me that Lucas had a seizure. It was quite a process, I ran to try to ease my own stress - I eventually worked my way up to 40-50 miles a week. Right before Christmas I suffered a leg injury and was unable to run. I have spent the last few months training with P90X and have gotten into the best shape of my life and was able to run a 10K last weekend in 56:59!
When I read about TEAM ETP forming to run the Marine Corps Marathon I immediately knew I had to be there. I had to run too. I knew I wanted to run for my son. I am hoping to show him that he can be strong, have courage and have hope for a normal life in the future. I am honored to be on this team!
To support Aidan, visit his page
Hello, to all of my fellow runners. My name is Jerry Preston (Jerry P). I live in New Jersey with my wife of 25 years, Diane. My son Aidan (Aidan P) and I are involved with this very special group, TEAM ETP.
In fact, Aidan is running on his 18th birthday. I'm not sure if I would have done that at age 18. I have 3 other boys, Patrick-25, Kevin-23 and Kieran-15. I have run 5 marathons. I have run 2 with Patrick and 2 with Kevin. So Aidan is next. Kieran keeps making me promise to have at least one more in me. Hopefully, that will work out. We are participating with the Epilepsy Therapy Project (TEAM ETP) in hope that the monies raised will help to continue advancing therapies for those of us with Epilepsy.
Aidan picked this cause because I think he was the most shaken about my seizure and my having Epilepsy. Aidan is 17. He is a senior in high school. Aidan attends a High Technology high school and hopes to be a doctor one day. So the college search is on. I can't wait to share this special day with him.
My story certainly isn't as scary as those who have written before me. So hearing them makes me want to help this cause even more. I was first diagnosed only 4 years ago, at age 46. While I was at home watching the television, I had what I thought was my first seizure. It was my one and only major one. (I was watching the Mets play, so it's no wonder). My family was all present at the time and they still don't like to talk about that day. Watching TV and then waking up in the hospital was pretty scary. I did not and still do not have any memory of anything that happened for about 2 weeks after. I have been a Police Officer for the last 25 years and live in the next town, about 30 people were in my house in minutes and about 50 police officers had to be thrown out of the hospital. I couldn't be more blessed with these friends. With the support of my department and the right medicine I was luckily back to work in about 3 months. I have not had any major seizures since but I continue to have small (focal?) ones often. I have had these for many years (20+?) but just ignored them. I just thought they were some kind of small panic attack. Since they came and left within 20 seconds or so, I gave them no thought. Typical, I guess for a stubborn male.
I have a great doctor, Dr. Orrin Devinsky, from St. Barnabas Hospital here in New Jersey. Dr. Devinsky is the co-founder of the Epilepsy Therapy Project. I'm lucky too, that he is a big runner and has helped me get on the right meds. The only real symptom I have is a familiarity condition. Everyone looks familiar to me. This is a strange feeling but I have gotten used to it. I understand that this is a rare side effect, so I spent some time at NYU to figure out why, haven't yet (not sure they found anything up there).
I was excited when Kristel announce that there were more openings. My (5th son) family friend Christy Holly will be joining us and helping us raise more money. He's come all the way from Derry, Ireland to join our cause and help his friend (other Dad).
I am looking forward to meeting our group and am excited about our mission. Best of luck to all!!!
My name is Michael Quesnel, the father of my beautiful daughter, Emmarose, who was diagnosed with epilepsy on February 13, 2009. We are told her case is atypical because of her age of 14 being first diagnosed. The first few years have been a roller coaster ride not just for Emmarose, but also for my son Nicholas, my wife Gayle, and for me. Through trial and error with several different medications, a medication was found that fits Emmarose just right; we are truly blessed. The current medication has not altered her wonderful personality, and yet has eliminated her daily seizures. Since being diagnosed, Emmarose participates in epilepsy awareness activities and fundraisers. She is now 16 years old, and has passed her driver's permit test, which is so exciting for 16 year olds. Entering her junior year in high school, she is looking forward to a wonderful year academically and as a defenseman on the varsity soccer team. Throughout all of this, she has been able to maintain a 4.0 GPA in high school, and plans on entering college in the Fall of 2013, in the medical field. The family picture on this page is from her Sweet Sixteen Birthday Party.
Now a little about me, a few years ago, I started running, and quickly grew a love of it for many reasons. First came the 5k runs, which led to 10ks, which led to ½ marathons which led to marathons. I am so proud and fortunate to participate in the Marine Corps Marathon, aka "The People's Marathon", in Washington D.C. on October 30, 2011 on Team ETP. The real heroes, besides our past, current and future service men/women, are the people who suffer everyday with Epilepsy.
I welcome your donation to sponsor my efforts in meeting my fundraising goal!
This will be my first marathon! I am running in thanks and celebration of a miracle. Everything was perfect and we had no idea how serious and devastating epilepsy could be. Jacob's first known seizure was on June 15th, 2007. We were told it was likely a onetime occurrence and after much drama, two ambulance rides, an overnight stay in the ICU, we went home and tried to put it out of our minds. But as the summer progressed so did Jacob's epilepsy. By September, Jacob was having daily seizures. We padded our house, we tried to protect him from his own body the best we could. We felt as though we were living a nightmare as we watched our son's epilepsy progress and his development regress.
Eventually, (after many more ambulance rides, hospital stays, etc) Jacob was diagnosed with a rare and severe form of epilepsy called Doose Syndrome or Myoclonic-Astatic epilepsy. It is a difficult to treat form of epilepsy and can seriously impact development. It is also dangerous due to the myoclonic-astatic seizures. These seizures cause the body to suddenly have an increase in muscle tone followed by an immediate loss in muscle tone. This seizure causes the child suffering from it to appear to slam down into whatever is in front or even behind them. Jacob wore a helmet for protection, but still suffered from many injuries as a result of his seizures.
On May 26, 2008 we started the ketogenic diet. At this point, five medications had failed to control Jacob's seizures and in fact usually appeared to cause a worsening. He also suffered from many side effects from the medications. But, miraculously, on November 28th, 2008, after more than a year of a multitude of daily seizures, Jacob's seizures stopped thanks to the ketogenic diet. Jacob was on the ketogenic diet for 998 days and on March 17th, 2011, he officially finished the ketogenic diet and has remained seizure free!
I am so grateful for my healthy son. Today he is in second grade, plays football and lacrosse, swims, and loves building legos. He will always be my hero. I'll never forget the way he would get back up after having a drop seizure and try to keep on living. He wouldn't let it keep him down. I'll never forget his strength and sacrifice while on the ketogenic diet. He is the strongest person I know!
I run in thanks of our miracle and in hopes that other children can have a similar miracle!
Thank you so much for your support.
To support Erick, visit his page
To support the Ruhls, visit their page
In the April edition of the Spotlight Newsletter, we introduced Dave Scott. Dave has shared about his experience with epilepsy, his extensive marathon experience, and excitement to run with TEAM ETP to raise funds in support of our mission to accelerate new therapies for people with epilepsy and seizures.
Ultimately, Dave was assigned to the surface ship USS SAIPAN and has been proud to serve his country.
"I have been carrying the American flag since 1998…you would not believe how quickly Old Glory brings a group together… it is an honor to run for Epilepsy Therapy Project. I will do the very best I can to help you and thank you for having me on your team. Oohrah!"
Dave will carry 3 ½ x 5 ft American flag the full 26.2 miles!
Below is a letter I received from my Aunt Eileen. I am running for her. She is in the middle of the picture along with my wonderful family after I finished the Boston Marathon.
Thank you for choosing to make a major commitment of time and energy to train and run the Marine Corps Marathon for the Epilepsy Therapy Project. I am overjoyed by your efforts.
I don't know what I can tell you about having epilepsy except that over the past twenty-some odd years, since I first was affected by it, I have experienced fear, anger, confusion, embarrassment and frustration. It was cyclical. I felt cheated by having to give up driving, because i thought it would completely remove my independence. I admit, I still have difficulty asking for rides, and sometimes worry about being a burden on others but, I have also learned that it's only natural to need others. It's something we can and will all share at certain times in our lives. I am also very lucky to have such a supportive family and friends that care so much for me. I am sure it's not easy to watch a loved one have seizures and lose consciousness, but I never realized it until I saw myself on video having a seizure in the early part of my diagnosis. My only reaction was to cry; it looked far to helpless to be me. I began to see why some people found it to be a terrifying illness. Treatments are difficult as they are with a lot of chronic illnesses. Months and even years are spent by individuals with epilepsy trying to find medications that not only help quell the seizures but that are tolerable. Side effects of anti-convulsants can be horrendous. Sometimes it seems it's better to have the seizures. Drugs can affect short term memory as much as the seizures themselves. Speech and word recall are affected at times, as are entire events - They seem to vanish. Seems unfair, unjust. Because the type of seizures that I have are partial complex, they are also some of the hardest to erradicate. They begin in the temporal lobe but not in one spot. Sometimes, they generalize and affect the entire brain. So for me, surgery is not an option nor are things like vagal nerve implants. The medication I take calms their frequency but will never entirely remove them. I read about SUDEP and wonder if I sleep, will I wake up? I'd like to say I have learned to accept them as part of who I am, but it really is not that easy. I don't want to. I'd like them to leave but there is no current cure, just diagnosis and treatment to attempt to make them more tolerable. More needs to be done. So if I tolerate seizures and accept the illness, I'm not exactly helping the cause, am I? The good news is that more people are aware of Epilepsy; largely because of organizations like the Epilepsy Therapy Project and EF. Organizations like these are global, and make people with epilepsy feel part of a cause and less embarrassed by their illness. People like you who chose to help are what we need, and I appreciate your efforts so much.
I have kept a journal for the past 15 years or so, about the seizures, what they feel like, what recovery is like, the frustration and fear they cause. Some of my entries are graphic, the most visual recalling a feeling of falling into a black hole at a rapid pace but I think I see a lot more strength than fear throughout this journey and maybe even some peace with my position. That can only be good. Thank you for all your help.
To support Joe, visit his page
To support Heather, visit her page
On April 4,2008 my son Carson had his first seizure. My husband and I were horrified as we watched our 15 month old son having a seizure and not knowing what to do as we waited for the ambulance. It took over an hour for him to come out of it and regain complete consciousness. About two weeks later he started having several a week. We then started the long process of getting his seizures under control. He is currenlty taking two medications twice a day. His seizures are now shorter in length and less frequent but still two medicaitons a day twice a day is a lot for a little body. Carson is also having speech issues and sensory issues and we are not sure if that too is related to the epilepsy. He has spent more time in doctors offices and test then most adults. His strength and kindness is why I am taking on such a big race.
On Oct 30, 2011 I will be running my first marathon the Marine Corps Marathon in DC for Epilepsy! The money donated will go to finding improved treatments for epilepsy. It would be great if doctors could find improve treatments. Taking two medications at such a young age comes with side effects. I am really in over my head this time!!!! But how could I not run for something that my son deals with daily. Click the link below to sponsor my efforts in meeting my fundraising goal, for Epilepsy Therapy Project!
To support James, visit his page
To support Eileen, visit her page
To support Jeremy, visit his page