Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of epilepsy-related mortality and the second most common cause of sudden death in children. Sadly, many are still unaware of SUDEP and its risk factors, and even today some neurologists are hesitant to discuss it. CURE is a groundbreaking leader in SUDEP research efforts and has persuaded the government and other organizations to focus on this devastating consequence of epilepsy.
We must find a way to end SUDEP. Your ongoing support ensures that CURE can continue investing in transformative research that saves lives and moves us closer to a cure for epilepsy.
Erika was 18 years old when she had her first seizure. By age 29, she was seemingly seizure free, successful at work, and happy in life. She loved nature, riding horses, and hiking in New England. Erika adored her fiance, Matthew, and their relationship was nothing short of a fairy tale love story. Then, two months before her wedding, a seizure took her life. Erika’s death was ruled as SUDEP, or Sudden Unexpected Death in Epilepsy.
Chris was a smart, generous, and thoughtful 21-year-old. But he struggled with epilepsy daily: the mind-numbing medications and side effects, short-term memory loss, and lethargy. Chris lived with constant unpredictability. When and where would the next seizure happen? Would they ever be controlled? Chris never got those answers. Ten weeks shy of his college graduation, he died of an epileptic seizure. SUDEP was the cause of death. Before his passing, his family had no idea that Chris was at risk of losing his life to SUDEP, or that epilepsy kills thousands of Americans in this same way each year.
This holiday season, please join us in honoring the memory of Erika, Chris, and all the loved ones lost too soon to epilepsy. We hope you will support CURE’s work to discover the causes, find preventative strategies, and increase awareness about SUDEP. . . and help save lives.
“I have never felt so powerless as when I watched Isaiah’s first seizure.” –C. Renzi Stone, Isaiah’s father
Isaiah had his first seizure when he was just four months old. For ten excruciating minutes, his father cradled Isaiah’s rigid body as his eyes fluttered to the back of his head and his legs jerked uncontrollably.
It soon became clear that Isaiah, like one-third of epilepsy patients, was unresponsive to current treatments. On the 333rd day of Isaiah’s life, he had a fatal seizure and died.
At the time of his passing in 2010, there was no known cause for Isaiah’s epilepsy. However, last December, his parents received a call from his neurologist. A periodic re-screening by the lab that conducted Isaiah’s original genetic testing found the faulty gene. Isaiah’s had Dravet Syndrome, a rare, catastrophic form of genetic epilepsy that starts in the first year of life and is characterized by frequent, prolonged seizures.
It’s hard to say if Isaiah’s story would have had a different outcome if he had received the diagnosis sooner. But thanks to CURE’s Epilepsy Genetics Initiative (EGI), families may not have to wait years to find out the truth. Please help us continue these efforts with a year-end gift to CURE.
When Mickie was born, she was a beautiful, normal, healthy baby. Then she began having seizures at the age of three months. Soon thereafter, she was diagnosed with intractable epilepsy and infantile spasms (IS), and her parents were forced to make agonizing decisions about her care.
After eight different medications failed to stop Mickie’s seizures, physicians suggested that a major surgery might be her only hope. Without it, her seizures could eventually prove debilitating or even fatal. The day before Mickie’s first birthday, she underwent brain surgery and has not had a seizure since. Today Mickie is active and healthy but still recovering from the damage inflicted by epilepsy. She undergoes regular therapies to improve her speech and must take anti-seizure medication every day.
Mickie’s quality of life improved with surgery, but for far too many children with infantile spasms, these results are not possible. That is why we hope you consider CURE during your annual holiday giving so that we can continue to drive research forward.
CURE’s Infantile Spasms (IS) Initiative has advanced disease-modifying therapies for kids like Mickie by focusing on the underlying pathology of this syndrome. In a groundbreaking, multidisciplinary “team science” approach, CURE awarded $4.2 million in grants to investigators to advance cutting-edge research to find a cure for IS. This collaborative, milestone-driven project examined potential therapeutic pathways and biomarkers in order to improve treatment options and decrease lifelong disabilities that often result from IS. With additional resources we can build on the important work done by our preeminent investigators.
This year, as you consider your annual holiday giving, we hope you will consider CURE and its impact on kids like Mickie and the hundreds of thousands of other children with epilepsy.
Our work inspires and gives meaning to parents of children with IS. “CURE gives children their best chance,” Mickie’s mother, Kristie, says. “It offers hope for families with intractable epilepsies, and pulls all the parts together. CURE is a vital link in the chain that connects mothers like me to the leading-edge research that is pushing us closer to a cure.”
Your ongoing support will help ensure that the finest scientific minds continue working together to move us closer to our ultimate goal: no seizures, no side effects, and a cure for epilepsy.
Mickie’s mother, Kristie Griess, considers Mickie’s journey the definition of a miracle and founded her own nonprofit – Mickie’s Miracles – aimed at creating awareness, education, and advocacy around pediatric epilepsy. She is also a passionate supporter of CURE.
Miguel Cervantes admits he was distracted while auditioning for the title role in the Chicago production of Hamilton. It was May 2016, and his 7-month-old daughter, Adelaide, had just been diagnosed with epilepsy. On the day of Cervantes’s third callback in New York City, Adelaide was getting a spinal tap to try to figure out the cause. “A friend of mine happened to be outside the studio after the audition,” Cervantes remembers. “I was talking to him and put my head in my hands and got a little emotional, and he was like, ‘Hey, man, I’m sure you did great.’ And I was like, ‘Dude, thanks, but I don’t care about Hamilton that much.’?”
The news got worse a couple of months later, when doctors discovered that Adelaide had what’s known as infantile spasms, a particularly devastating form of epilepsy that can lead to severe developmental and cognitive delays. Says her mother, Kelly: “You go to the hospital and find out you have cancer, and it’s, ‘Here’s the treatment.’ You get an epilepsy diagnosis, and you hear, ‘I’m sorry, there’s no cure. Let’s start throwing darts at a board to see which drugs might help.’?”
Miguel landed the part and moved his family to Chicago, where he and Kelly connected with Citizens United for Research in Epilepsy to see how they could help others in their situation. Founded by Susan Axelrod, wife of political pundit David Axelrod, nearly 20 years ago, CURE is the nation’s largest nongovernmental organization funding epilepsy research.
The Cervanteses have since become a driving force in CURE (Kelly, a former events planner, serves on its board), as well as its new face (Miguel appeared in a CURE commercial). Miguel has put to use the platform his Hamilton role has afforded him. In April, he and members of the cast performed at a CURE gala, helping to raise $2 million. That same day, he released “?’Til the Calm Comes,” a song he wrote about Adelaide, with all proceeds going to CURE. Now Miguel is helping relaunch the My Shot at Epilepsy social media campaign. (Think the Ice Bucket Challenge, but instead of being doused with cold water, participants strike the familiar Hamilton pose—left arm shooting up the sky—to encourage donations.) “The endgame,” says Miguel, “is to put epilepsy in the same conversation as Parkinson’s and Alzheimer’s and ALS.”
Inspired by the song “My Shot” from the musical “Hamilton,” actor Miguel Cervantes, who stars as the title character in the blockbuster’s Chicago production, is challenging the public to take their “shot” and help raise awareness and funds to find a cure for epilepsy.
“A year and a half ago, I knew very little about epilepsy and I was preparing to take on the largest role of my life,” Cervantes said in a YouTube video announcing the campaign. “Two months before opening night my daughter Adelaide was diagnosed with a rare, incurable form of epilepsy known as infantile spasms.”
Epilepsy is a group of neurological disorders of varying types and severities, which are characterized by recurrent seizures. More than 3.4 million Americans – 470,000 of them children – have epilepsy, according to the Citizens United for Research in Epilepsy.
Only 2,500 children are diagnosed with infantile spasms in the U.S. each year, according to the Child Neurology Foundation. The disorder is so uncommon that most pediatricians will only see one to two cases during their careers.
“It breaks my heart when I look into my daughter’s eyes and know there is not yet a cure that can help her,” Cervantes said in a news release. “That’s why I’m inviting everyone to join me in this National Epilepsy Awareness Month in a vital campaign to help raise awareness and funds for a cure.”
Through the “My Shot at Epilepsy Challenge,” participants are asked to take a photo or video of themselves striking the “My Shot” pose (arm raised in the air, with the index finger pointing up), make a donation online and share their “shots” on social media using the hashtag #MyShotAtEpilepsy and challenging three friends to join the cause and donate within 24 hours.
Proceeds from the campaign created by Cervantes and his wife Kelly, a CURE board member, will directly fund epilepsy research.
“The ‘My Shot at Epilepsy Challenge’ is a great opportunity to raise awareness and promote understanding,” said CURE CEO Kate Carr in a news release. “Many, whose lives are not touched, do not understand the severity and impact of this disease. We hope that this campaign will bring attention and funds to this cause and help advance the search for answers that can transform and save lives.”
Miguel Cervantes and his wife, Kelly, welcomed daughter Adelaide in October 2015. They sensed that something was amiss early on.
“She wasn’t developing on a regular trajectory,” said Cervantes, who stars as Alexander Hamilton in the hit musical theater production “Hamilton” in Chicago. Soon after, Adelaide had a seizure.
“Then the terminology ‘epilepsy’ starts coming into the conversation about what’s wrong with her,” he said.
Actor Miguel Cervantes with his daughter, Adelaide, who has epilepsy.
When she was just 7 months old, Adelaide started having multiples seizures every day. She was diagnosed with infantile spasms, a serious epilepsy syndrome in infants that is frequently associated with developmental delays, according to the national nonprofit Epilepsy Foundation.
“The doctor said that ‘we don’t have any real treatment for this. We have some treatments that may or may not work, but there is no cure,’ ” he recalled.
While Cervantes was struggling with Adelaide’s care, he landed the lead role in the play. “It is the highest highs and the lowest lows all at the same time,” he said.
Take the challenge
Epilepsy is a disorder in the brain that causes seizures. According to the US Centers for Disease Control and Prevention, the cause is not always known but can be the result of a head injury, a brain tumor, a stroke or an infection in the central nervous system.
Motivated by his personal connection, Cervantes teamed up with Citizens United for Research in Epilepsy, commonly known as CURE, and the Epilepsy Foundation to raise awareness and funding for research during November’s Epilepsy Awareness Month.
Miguel Cervantes, star of the Chicago production of “Hamilton,” says he was inspired by the show to get involved in epilepsy awareness.
Cervantes created the My Shot at Epilepsy Challenge, which urges people to take pictures in the “Hamilton pose” and donate to epilepsy research. They can share the pictures on social media, tagging friends using the hashtags #MyShotAtEpilepsy and #CUREepilepsy and challenging them to participate within 24 hours.
His aim, he said, is to get epilepsy into the mainstream conversation alongside other severe neurological disorders like Parkinson’s, amyotropic lateral sclerosis and Alzheimer’s.
“That is our goal and hope. We are here to help my daughter and to help other families that are also dealing with this kind of thing too,” he said.
Adelaide is 2 years old, but she functions much more like a newborn, Cervantes said. “She doesn’t sit or stand or talk or babble. We are always watching her to see if there is a seizure. We are always looking at her to see if there is any sign of regression,” he said.
“We have our bars very low for progress right now. Our hope is that if we can keep all the seizures under control, then any progress her brain can make due to whatever it is will begin to see itself,” he added.
Epilepsy is the fourth most common neurological disease in the United States, according to the foundation. The CDC reports that in 2015, 3.4 million people were receiving treatment for epilepsy or had had one or more seizures in the past year.
Susan Axelrod, along with other parents of children with epilepsy, founded the nonprofit CURE in 1998 to address a lack of advocacy toward scientific research for the disease. “We looked to the National Institutes of Health and found that the budget there, was sadly, sort of reflected our lack of progress in the area,” she said. “We also looked to the private funders, and there was very little going on, very little interest amongst private donors.”
Axelrod too has a personal connection. Her daughter, now 36, started having seizures when she was 7 months old. “We spent the first 18 years of her life fighting the lack of understanding about the epilepsy disease, the stigma associated with it and most importantly our inability to stop her seizures, even if we were willing to tolerate pretty atrocious side effects from the medications,” she said.
Dr. Ajay Gupta, head of pediatric epilepsy at the Cleveland Clinic, said all epileptic medications have side effects and must be carefully monitored. “That’s why it’s really important when you make a diagnosis to have a very good discussion with the family,” he said. Side effects can include sleepiness, reduced muscle tone, tunnel vision and reduced sharpness of vision, he said adding that they can be irreversible.
Axelrod said that although her daughter has made tremendous strides, she will not be able to live independently and takes multiple medications every day.
“The diseases in which you see progress have strong strong advocacy groups behind them. Epilepsy did not,” she said.
“The awareness component is essential to making progress, to raising the dollars, building a community that will be great ambassadors, will be the people who participate in clinical trials when we get to that point,” Axelrod added.
And Cervantes is trying to do just that. “I can use Hamilton to get the message out that says this is something that needs to be more in the mainstream, more in the forefront and really talked about to see if we can get some better treatment so that people aren’t constantly on guard for, you know, seizures to come back because that seems like a terrifying way to live,” he said.
More than 3.4 Million Americans, 470,000 children, Affected by the Disease
‘My Shot at Epilepsy Challenge’ to Raise Awareness for Epilepsy Research
CHICAGO, IL – Citizens United for Research in Epilepsy (CURE) and the Epilepsy Foundation are joining forces with a power player in the Broadway community this November to raise critically-needed funding for epilepsy research. Officially launching November 1 for National Epilepsy Awareness Month, the “My Shot at Epilepsy Challenge” is an awareness and fundraising campaign inspired by the song “My Shot” from the hit musical HAMILTON. Created by Miguel Cervantes—star of the Chicago production—and his wife Kelly, a CURE board member, the My Shot at Epilepsy Challenge proceeds will directly fund epilepsy research.
Miguel and Kelly are driven to fight for a cure because of a deeply moving personal connection to the cause. Their daughter Adelaide suffers from a severe and incurable form of epilepsy known as infantile spasms, the cause of which remains unknown.
“It breaks my heart when I look into my daughter’s eyes and know there is not yet a cure that can help her,” says performer and activist Miguel Cervantes. “That’s why I’m inviting everyone to join me this National Epilepsy Awareness Month in a vital campaign to help raise awareness and funds for a cure.”
Through the “My Shot at Epilepsy Challenge”, Miguel is urging the public to follow three steps:
Take Your Shot– Take a still photo or video striking the “My Shot pose” (arm raised in the air, with index finger pointing up)
Share– Post “shots” on social media, using the hashtag #MyShotAtEpilepsy, tag friends and challenge them to participate and donate within 24 hours
“Millions of Americans are living with epilepsy,” says Susan Axelrod, Founding Chair of CURE. “This places an immense burden on these individuals, their families and society as a whole. The need to advance research efforts in this field is urgent and long overdue. We are so grateful to the Cervantes family for sharing their family’s story to help all who struggle.”
Epilepsy is a disease with a wide spectrum of severity. More than 3.4 million Americans, 470,000 of them children, have epilepsy. For some, it has minimal impact on daily life, but for more than a million patients, many with seizures that cannot be controlled with existing treatments, epilepsy can have significant lifelong impact on the ability to live independently and even on life expectancy. Epilepsy impacts 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined. Yet NIH funding is 60% less than funding for these other neurological diseases combined.
“This is an exciting time where advances in scientific research appear more promising. The ‘My Shot at Epilepsy Challenge’ is a great opportunity to raise awareness and promote understanding,” says Kate Carr, CEO of CURE. “Many, whose lives are not touched, do not understand the severity and impact of this disease. We hope that this campaign will help bring attention and funds to this cause and help advance the search for answers that can transform and save lives.”
“Seizures in approximately one-third of individuals with epilepsy continue to be uncontrolled today – with no significant difference in patient outcomes in over 50 years,” says Philip Gattone, President and CEO of the Epilepsy Foundation. “That means, every year, millions of individuals and families suffer devastating impact, including the immeasurable pain of thousands of lives lost. Through the ‘My Shot at Epilepsy Challenge’, Miguel and Kelly Cervantes courageously offer new hope and inspiration that by coming together, we will discover new therapies and research that will end epilepsy once and for all.”
About CURE — Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. It was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. CURE is dedicated to the goal of “No seizures. No side effects. End epilepsy.” CURE works relentlessly to find a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease. CURE has the distinction of being a 4-star charity on Charity Navigator, the highest award, recognizing sound fiscal management and commitment to accountability and transparency. For more information on CURE, please visit www.CUREepilepsy.org
About the Epilepsy Foundation — The Epilepsy Foundation, a national non-profit with over 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit epilepsy.com. The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP. (www.epilepsy.com)
Miguel Cervantes, star of Chicago’s production of “Hamilton,” tearfully opens up about his young daughter’s epilepsy on Wednesday’s episode of “Rachael Ray.”
Adelaide was diagnosed with epilepsy after she began having seizures at seven months old. Cervantes and his wife Kelly, who appear on Ray’s daytime show via Skype, discuss their work with CURE, an epilepsy research organization founded by Susan Axelrod, who is married to David Axelrod, former adviser to President Barack Obama; and the support they’ve received since they moved to Chicago.
“Moving from New York at the time that we did, we were in a pretty tough spot with (Adelaide). Being able to come here and set up our family here and the medical care here has been just unbelievable, and the community has been great. My family in ‘Hamilton,’ they have been nothing but supportive,” Cervantes said.
“People after the show are always asking me, ‘How’s your daughter, how is she doing?’ So, it just feels like this is the right place for us, this is the right place for my family. It’s a hard journey with her, but being somewhere like this, it feels like this is going to help us to move forward.”
Ray surprises the couple with a $10,000 donation to CURE from Happy Family Organics, an organic baby food company. “Rachael Ray” airs at 10 a.m. weekdays on WGN-Ch. 9.
I come from a family of epileptics. My father had it when he was younger, my two older sisters had it, followed by me and my younger brother.
My oldest sister, Paula, was the first of my siblings to exhibit signs of epilepsy. She first took a seizure when she was 2 or 3 years old while walking alongside my mother. This was in the late 1970’s and my mother had never been exposed to it so she did not know what was happening. She brought Paula to the hospital and my father soon arrived too. The doctors were asking my parents all sorts of questions about their medical history and specifically about whether epilepsy ran in the family. Both denied ever having it. It all only started to make sense when my paternal grandmother showed up and very casually told my mother not to worry, as my father had had it when he was younger.
My father was too embarrassed to say he had a history of epilepsy. Having grown up in Ireland in the 1950’s, he had experienced first-hand the stigma of epilepsy. His father, my grandfather, always told him never to talk about it. To this day he still doesn’t.
Times have changed since then and people are more aware of epilepsy, but to say that the stigma is gone would be a lie. I suffered with epilepsy until I was 7, and although I was never embarrassed to say that I had a history of it, I did feel that I was on the lower end of the scale when it came to the illness. There was a girl who lived around the corner from me growing up and she suffered from a severe form of epilepsy—so severe that she had to have surgery as medication could not control it, or so the neighbors said. She would lose her temper a lot and get into trouble with the police and people would make fun of her because of it. At the time, my view, as someone who also suffered from epilepsy, was that I thought she was unhinged. Everyone else thought so too, and that it was because she was epileptic. And I thought it too. But that didn’t apply to me, I thought, because I was on the lower end of the scale. So not only was she being judged by people who had no exposure to the illness, she was being judged by people who HAD the illness.
I had a mixed form of epilepsy. I had the typical epileptic seizures at first but then it got milder and it would manifest itself in other ways, such as staring, eyes rolling, and falling down. It became so frequent that my mother made me wear a helmet when I was outside playing. We lived on the top floor of an apartment block and she was afraid that I would fall down the stairs because of it. Another misunderstanding about epilepsy is that anyone who suffers from it has full-on seizures. From speaking with people I knew over the years about my epilepsy, I found that the majority of them were surprised to hear that having epilepsy doesn’t necessarily mean that you’re going to collapse and go into a full-on seizure.
Epilepsy is such a common illness, yet I personally don’t know many people who suffer from it, or better yet are willing to talk about it. There is still a stigma, even in these times, over 50 years on from when my father was growing up.
Athough ours is not a story of epilepsy, seizures have now been added to the long list of challenges in our daughter’s world. As a mother of a child with “complex medical issues” I often wish it were me, and not my daughter, who would have to deal with the everyday difficulties that life brings her way. It just doesn’t seem right that a child, now only 11, should have to endure these challenges, and yet she does it with such grace.
My daughter was born with a muscular myopathy that impacted her heart. She went into heart failure at four weeks of age, but a cocktail of medications allowed her heart to strengthen and stabilize. She quickly demonstrated her fighting spirit, amazing her doctors as she pushed through her myopathy, continually getting stronger. As a toddler she fought to eat, crawl and ultimately walk, always persevering through countless hours of doctor appointments and therapies.
Unfortunately her heart couldn’t keep up with her body however, and at 4 1?2 she went into heart failure while at the hospital for her quarterly check-up. Sarah was put on a heart bypass machine and for seven months we lived in the cardiac ICU of Philadelphia’s Children’s Hospital. There we battled infections, viruses and other complications, tweaking treatments and medication until she finally received her perfect new heart. While she gained a strong new heart, she also left with a spinal cord injury and weakened lungs, the types of issues that come with the traumas of chronic illness.
When I was first asked to write this piece, I wasn’t sure how our experience tied to epilepsy. Although I realize all complex medical conditions have a physical and emotional toll, I wasn’t sure I could fully understand what it was like to live with something that interfered with one’s cognitive ability. My daughter has always been able vocalize her pains and, although stressful, we’ve generally felt we had time to think through a plan. Unfortunately, we can now add seizures to our list of surprises. Her seizures were caused by a condition known as PRES, brought on by a sudden and unexplained spike in her blood pressure. Other than seeing her heart stop for the first time, this may have been the most frightening experience of our lives. As her eyes veered off to the side and she went basically unresponsive, I felt helpless. I had no idea how to respond and believed my worst fears may have been coming true. We watched her stare off into space and knew her cognitive function was being compromised for some unknown reason, so we weren’t sure we’d ever again see her spunky spirit or smile. Thankfully the “R” in PRES stands for reversible and with her blood pressure under control, we can hope to avoid future episodes.
As I reflect on this path we’ve traveled, two analogies often come to mind. At times I feel as if we’re fighting a war. As we manage through the stress and face difficult decisions, we must trust and depend on our officers (medical staff) and we have become close with the fellow soldiers (families) around us. Families in a pediatric ICU come from all walks of life, and like soldiers, we deal with our stress in various ways, but all are there for a common cause: to care and protect their children. We feel their joy but we also bear their grief. I’ve also thought of myself as one of those toy punching bags that takes the punch but keeps popping back up for more. Just when we pull ourselves back together, we get punched down again and the air slowly leaks out of us. It’s the simple messages from friends or smiles from our daughter that fill us back up and restore our strength.
This world has opened our eyes to many things both good and bad. A life with chronic illness prevents you from ever being able to truly relax. It’s a rollercoaster ride and you know you’ll never get off it. We worry about what the next day may bring, and are often afraid to plan too far into the future. I firmly believe there is no pain greater than watching your child suffer.
However, we do our best to focus on the positive. I am continually humbled by the goodness in people. We have doctors and nurses who are like family, seeming to care for Sarah almost as if she were their own child. I’m struck by the everyday stranger who looks past the wheelchair and trach tube and talks to Sarah like any other child, bringing a big smile to her face and helping her see how special she truly is.
As I watch celebrities dump ice water on themselves or hear that On The Edge: Living with Epilepsy will be broadcast to millions of PBS viewers, I’m also driven by hope. Over the course of Sarah’s short life she has benefited from new medications, therapies and medical devices that have enabled her to live a happy and productive life. We hope to see continued focus and progress treating spinal cord injuries, managing transplanted organs and treating the many other illnesses such as epilepsy. We know there is so much progress yet to come.