Meet the 2019 Class of CURE Scholars!

Introducing our 2019 Education Enrichment Fund scholars! All 10 remarkable students have all been personally impacted by epilepsy and will together receive nearly $50,000 to advance their education while bringing greater awareness to epilepsy.

The EEF Scholarships—made possible by generous support from Lundbeck—award one-time scholarships (up to $5,000) to those living with epilepsy, or family members and caregivers of those impacted by the condition. The scholarship, which is in its fourth year, covers tuition, books, and academic materials and supports coursework advancing personal knowledge in research, health education, and advocacy in relation to epilepsy.

Ana-Sophia Beardsley
Asbury University

After being diagnosed with epilepsy as a teenager, Ana-Sophia searched for a way to process her emotions while connecting with other teens impacted by this condition. When she couldn’t find these resources and ways to connect, she took action, speaking out about her epilepsy and actively work to build a network of teens dealing with the same thoughts and emotions.

Ana-Sophia will use her scholarship to continue learning how to develop a community through writing.

Read Ana-Sophia’s Story

Emma Cardwell
Middlebury College

Emma’s sister, Abby, was diagnosed with epilepsy at the age of 2. The cause of Abby’s epilepsy is unknown, and she continues to battle seizures and struggle with side effects from medication. Seeing the way Abby has been impacted by epilepsy sparked Emma’s interest in neuroscience and passion to make a difference. Currently, Emma is interning with Dr. Sunita Misra in Chicago and researching what genetic and brain MRI abnormalities predispose a patient to Lennox-Gastaut syndrome (LGS).

Emma is determined to help further the search for a cure by studying epilepsy genetics.

Read Emma’s Story

Emma Cardwell

Connie Chang-Chien
Johns Hopkins University

In 2018, Connie was diagnosed with Stage 2 brain cancer and epilepsy. Her recovery has included medications, MRI scans, oncologists, neurosurgeons, neurologists, and two brain surgeries. The balance between her health and academic excellence at times presented challenges, but Connie met these challenges with eagerness and determination.

Connie will work toward a degree in Molecular and Cellular Biology and Public Health, in the hopes of helping patients find the best way to treat their conditions while educating the public about epilepsy.

Read Connie’s Story

Emma Lipkowski
Rose-Hulman Institute of Technology

Emma’s brother has been diagnosed with Idiopathic Generalized Epilepsy. His condition impacts all aspects of his life and seeing this has inspired Emma to devote her studies to creating change. She hopes to create life-saving technologies through research.

Emma will use her scholarship to study how to use artificial intelligence and nanotechnology to analyze epileptic brain activity and predict the onset of seizures.

Read Emma’s Story

Emma Lipkowski

Gillian Mangan
University of Alabama at Birmingham

As a teenager, Gillian was diagnosed with petit mal epilepsy, which later evolved into grand mal epilepsy. She turned to blogging and photography to cope with her condition, meeting a community of others impacted by chronic conditions. She aspires to use her education to help others find that critical human connection.

Gillian will be pursuing a Master of Science Degree in Healthcare Administration, where she will research how to advance telemedicine and treatment centers for chronic illnesses.

Read Gillian’s Story

Gillian Mangan

Miriah Mayhugh
Pikes Peak Community College

Being diagnosed with epilepsy at the age of 7, this condition has been a constant in Miriah’s life. While she is two years seizure-free, she describes getting to this point as a “wild ride” which has sparked her passion for nursing.

Miriah is using her scholarship to support her dreams of becoming a pediatric nurse, specializing in childhood epilepsy.

Read Miriah’s Story

Mariah Mayhugh

Sasha Pina
Institute of Health Science

Sasha developed drug resistant post-traumatic epilepsy 10 months after receiving a traumatic brain injury during a soccer game. Her diagnosis opened Sasha’s eyes to how people with different challenges are treated, and her mission is to educate others about epilepsy, seizure first aid, and SUDEP.

Sasha completed a nursing assistant program and will use this scholarship to continue her education. She hopes to become an EEG technician, while raising awareness about brain injuries.

Read Sasha’s Story

Sasha Pina

Sara Sheridan
Columbia Journalism School

Sara’s passion for writing began with her epilepsy diagnosis. She used writing to process her thoughts and emotions, eventually dedicating herself to journalism. Since then, she has worked for the UN, traveled the world, and worked to amplify the voices of others impacted by epilepsy.

Sara is pursuing her master’s degree in journalism, with the goal of becoming agent of hope for the epilepsy community.

Read Sara’s Story

Sara Sheridan

Kelli Stanley
Charleston Southern University

In 2005, Kelli’s sister, Emily, was diagnosed with Dravet syndrome, beginning both of their journeys with epilepsy. Kelli has always played a major role in Emily’s care and is now her second guardian. Due to Kelli’s close relationship with Emily’s doctors, nurses, and therapists, she became interested in the medical field, volunteering at free clinics and becoming a certified EMT.

Kelli is enrolled in a Physician Assistant program and is interested in a career in neurology or psychology. She wants to practice in rural settings where primary care is often limited.

Read Kelli’s Story

Kelli Stanley

Clare Tyler
University of Brighton

After struggling to gain seizure control for a decade, Clare found Keppra and then the ketogenic diet. The dietary therapy fascinated her, and she dedicated herself to learning as much as she could about its mechanism of action. Eventually this led Clare to CURE’s Day of Science event, which opened doors for her. She began working in the labs of CURE grantees Dr. Judy Liu and Dr. Kevin Staley during college, forming and testing hypotheses based on their work.

Clare’s dream is to become an epilepsy researcher and clinician to help patients in as many ways as she can while continuing to explore her passion for research.

Read Clare’s Story

 

Essay: My Childhood Seizures Could Have Been Terrifying, but My Dad Made It OK

When I was little, my dad explained my seizures to me using the vocabulary of electrical circuits.

“Your brain is like a light,” he said. “Most of the time it is on. Sometimes it turns off.” I was 6 and just tall enough to reach the switch plate by the bathroom door. “Those times when it is off,” he continued, “those are the seizures.”

I liked this explanation. Over coloring books and crayons, this became the way I described what a seizure was to my friends. My brain had a light switch, unambiguous and predictable. And cool. Something about having a brain that worked differently felt very cool.

As a child, I learned from my dad’s analogy that my seizures were not something to be afraid of. Lights were normal. They were everywhere. Once you learn how to operate a lamp, you never need to worry about getting lost in the dark. And so I approached the seizures with curiosity rather than fear.

‘Significant Help’: Experts, Community Laud Launch of National Epilepsy Helpline in Australia

Larissa Ryan has lived with epilepsy since she was eight years old. While she has a job and has been able to travel the world, Ms Ryan said her epilepsy remains unpredictable, which can be a problem.

“The frequency of the seizures, the intensity of the seizures and the impact and the uncertainty that has on my daily life is something that can be very scary for my kids, that uncertainty of not knowing what can happen,” she said.

Now, a new service aims to help Ms. Ryan and the 250,000 other Australians living with epilepsy. Launched on Tuesday, the Epilepsy Nurse Line provides access to nurses trained in epilepsy treatment between the hours of 9am and 5pm, seven days a week.

The director of comprehensive epilepsy services at Sydney’s Royal Prince Alfred Hospital, Associate Professor Armin Nikpour said epilepsy is a “very varied disease” and it is hard for patients to get information that is specific to their condition and experiences.

Carol Ireland, chief executive of Epilepsy Action Australia, said the federal government is providing $1.3 million in funding for the service over three years. This year’s funding went to training the 30 specialised nurses and setting up the service, and the rest will go to maintaining the helpline over the next couple of years.

“Once we start to advertise that there is such a service, then we expect we will get many more calls than we’ve been getting and that obviously increases the cost of the service,” she said.

When It Looks Like Dementia But Isn’t: Epilepsy Not Just a “Children’s Disease”

Last September, Guy Bradley began having episodes of severe and sudden confusion with night sweats and nausea.

“He’d wake up and not know where he was or what day it was,” said his wife, Harriet.

Also troubling: the 69-year old suddenly could not find his way around the golf course he’d played all his adult life.

With each of the four episodes, Harriet and Guy would head to the closest emergency room. Each time, the diagnosis was scary – and yet didn’t quite fit.

Dr. Terry O’Neill, Guy’s UK primary care physician, ordered an EEG to look at the electrical activity in Guy’s brain.  The next day, Guy and Harriet met with neuropsychologist Lisa Koehl, Ph.D., for a neurodiagnostic consultation. Koehl referred Guy to epileptologist Dr. Ima Ebong at KNI, who prescribed anti-seizure medications. KNI is certified by the NAEC as a Level 4 Epilepsy Center, which means patients have access to all the latest treatments, medical and surgical, with a higher degree of coordination among disciplines.

“KNI has the perfect integration of multiple specialties that’s truly unique in Lexington,” Ebong said.

Ebong says that seizures in most elderly patients can be controlled with anti-seizure medications, although this demographic needs careful attention to dosing, particularly in light of potential interactions with other prescribed medicines (almost 40 percent of patients aged 65+ take five or more medications).

CURE Champion Spotlight: How Hockey Player Amelia Murray Raised Nearly $35,000 for Epilepsy Research

Amelia Murray is determined use her passion for hockey to spread epilepsy awareness and fund critically-needed research. She started Shutouts for Seizures with her high school hockey team in 2010. As the program grew, she realized its impact could as well. In 2014, she started raising money to benefit CURE, eventually bringing the program to the Union College. In only 4 years, Shutouts for Seizures has raised nearly $35,000.

Shutouts for Seizures encourages families and friends to pledge donations per shutout (when a team is prevented from scoring for an entire game) earned by their favorite participating team. In this way, Shutouts for Seizures not only raises money for epilepsy research, but also celebrates the power of teamwork.

This initiative has a bright future. Amelia is hoping to expand her program to other college divisions across the country, involving more teams and communities. In addition, Amelia is working with the Goaltender Development Institute to bring her program to youth hockey leagues nationwide.

Uniting everyone through a common cause will spread word about the need for epilepsy and seizures research by increasing awareness in hopes of one day finding a cure.

-Amelia Murray, Shutouts for Seizures Founder and Organizer

A Mind Unraveled

A Mind Unraveled, a Memoir by Kurt Eichenwald, Benefits CURE

Kurt Eichenwald, an acclaimed and award-winning investigative journalist (The New York Times, Newsweek, Vanity Fair) and writer of bestselling books (Conspiracy of Fools, 500 Days, The Informant), is known for his relentless investigations and exhaustive research. A MIND UNRAVELED: A Memoir (Ballantine Books) utilizes the same approach—only this time, Eichenwald turns his journalistic lens on himself. Eichenwald is donating 50% of the royalties from sales of this book to CURE to help fund critically needed epilepsy research.

A MIND UNRAVELED is a deeply searing account of Eichenwald’s ongoing struggle with epilepsy. Diagnosed with the disorder as a teenager, Eichenwald details the abuses he faced while incapacitated post-seizure, the discrimination he fought that almost cost him his education and employment, and the darkest moments when he contemplated suicide as the only solution to ending his physical and emotional pain. He recounts how medical incompetence would have killed him but for the heroic actions of a brilliant neurologist and the friendship of two young men who assumed part of the burden of his struggle.

Over 3.4 million Americans (65 million worldwide) have been diagnosed with epilepsy, and many more cases go undiagnosed. While it is the fourth most common neurological disorder and affects people of all ages, it is a rarely discussed condition. A MIND UNRAVELED finally gives the attention epilepsy deserves and serves as an inspirational message for not only those afflicted with the condition, but also for anyone grappling with challenges they feel compelled to keep secret. Eichenwald shows how facing his own morality ultimately made him a stronger person, and that it is possible to rise from despair to the heights of unimagined success.

ABOUT THE AUTHOR:

KURT EICHENWALD is a New York Times bestselling author of four previous nonfiction books. His second, The Informant, was made into a movie starring Matt Damon and directed by Steven Soderbergh. In addition to his distinguished work as a senior writer at Newsweek and a contributing editor at Vanity Fair, Eichenwald spent two decades as a senior writer at The New York Times, where he was a two-time finalist for the Pulitzer Prize. He is also a two-time winner of the George Polk Award, as well as the winner of the Payne Award for Ethics in Journalism and an Emmy Award nominee. He lives in Dallas with his family.

Mayor Emanuel Interviews Singer, Actor and “Hamilton” Star Miguel Cervantes on “Chicago Stories”

On this week’s episode of “Chicago Stories” the star of Chicago’s “Hamilton” Miguel Cervantes gives Mayor Emanuel his take on the smash-hit musical, shares the story of his hard-won career, and talks about his biggest role of all as “Dad” and raising awareness for childhood epilepsy.

Born and raised in Dallas, Miguel wasn’t interested in theater growing up, at least not at first, but an audition for a local production in sixth grade planted the first step to a journey that took him to Dallas’ Booker T. Washington High School for the Performing Arts, Boston’s Emerson College, and then finally the bright lights of Broadway?—?or so he thought.

“When I graduated I went right to New York as the big fish in my school,” Miguel said. “I thought: ‘this is great, this is easy, this is going to be awesome,’ and then crash and burn.”

As Miguel told Mayor Emanuel, he wasn’t ready. (Though, as Mayor Emanuel told Miguel, the real problem was New York wasn’t ready for him.)

After a brief return home, Miguel hooked up with friends in Boston and embarked on an artistic rebirth that eventually brought him back to the Big Apple, but this time to a mix of Broadway, Off-Broadway, and touring productions.

“Opportunity comes at its own pace,” Miguel said, “and sometimes your opportunity is not when you’re 21 when you think you’re ready?—?that may not be the right time for you.”

For Miguel, opportunity came in a big way in 2016 when the mega-hit “Hamilton” was looking to recast its famous title role. Immediately once auditions started, Miguel could tell something was different.

“Three weeks later, after four auditions, I called my wife and said ‘I think we’re moving to Chicago,’” Miguel said.

Miguel’s biggest role of all though has been as “Dad” to his six-year-old son and two-year-old daughter Adelaide, who at seven-months-old was diagnosed with epilepsy just as “Hamilton” was coming into his life.

As devastating as childhood epilepsy is, the news got worse after doctors discovered Adelaide had “infantile spasms,” a particularly devastating form of epilepsy that can lead to severe developmental and cognitive delays.

Not knowing where to go or who to turn to, Miguel and his wife Kelly connected with the Chicago-based Citizens United in Research for Epilepsy, or “CURE,” the nation’s largest non-governmental organization funding epilepsy research.

“We got here terrified, just absolutely terrified,” Miguel told Mayor Emanuel. “And we come to Chicago and the folks at CURE wrapped their arms around us and said ‘we got you here.’”

Since then both Miguel and Kelly have become passionate advocates for epilepsy awareness through CURE, including their My Shot at Epilepsy fundraising campaign and the #MyShotAtEpilepsy Challenge.

Today, 3.4 million Americans suffer from epilepsy, including 470,000 children, while an estimated 65 million people currently life with epilepsy worldwide. Meanwhile, research is still underfunded, and comprehensive treatment for families like the Cervantes’ is still a long way off.

“What we say is we may not be able to do so much for [Adelaide]—what we can actually achieve in her life may be limited,” Miguel said, “but if we raise our voices and do everything that we can, at some point some parents will not have to go through what we have to go through.”

Be sure to listen to the full episode as Miguel and Mayor Emanuel talk about the impact of “Hamilton,” Chicago’s theater community and culture of giving back, and where Miguel hopes opportunity takes him next.

You can check out the full episode on iTunesSoundCloud, and Spotify.

CURE Ally Dr. Marcelo Diaz-Bustamante Works to Find a CURE for his Daughter’s Epilepsy

Dr. Marcelo Diaz-Bustamante of Johns Hopkins University is not only a devoted father; he is also a devoted researcher studying infantile spasms, a severe form of childhood-onset epilepsy. Dr. Diaz-Bustamante’s daughter Myriam was diagnosed with the disorder in 2016.

Infantile spasms is a hard-to-treat form of epilepsy that normally starts in the first year of life and is characterized by subtle seizures, abnormal brain activity, and developmental delay or regression.

Faced with Myriam’s daunting diagnosis, Dr. Diaz-Bustamante had his daughter’s genes sequenced as part of CURE’s Epilepsy Genetics Initiative (EGI). EGI examines genetic information to uncover the causes of epilepsy and advance precision medicine. Amazingly, gene sequencing pinpointed the cause of Myriam’s infantile spasms to a mutation in a GABA receptor, which is a type of neuronal receptor important in maintaining the balance of excitatory and inhibitory activity in the brain. After learning of this mutation, Dr. Diaz-Bustamante changed his research focus to devote himself to studying this infantile spasms-causing mutation.

Since his daughter’s diagnosis, Dr. Diaz-Bustamante has formed a deep connection with CURE. He has hosted a CURE-sponsored seminar at Johns Hopkins University and has participated in CURE’s Day of Science events. Dr. Diaz-Bustamante credits CURE with providing both education about and a human face to epilepsy, creating a feeling that he and his family are not alone in their fight.

In fact, Dr. Diaz-Bustamante believes the biggest challenge facing parents whose child has been diagnosed with infantile spasms is a lack of hope; “It is difficult to remain hopeful with all of the scary information available on the internet, coupled with many pediatricians’ lack of knowledge about the disorder.” Still, he is hopeful about the future of epilepsy research, noting that growth in the field over the past 10 years has been exponential with heightened understanding of epilepsy and increased research into new treatments and therapies.

While Myriam has gone through more than 5 different types of treatments and therapies to control her spasms, we are happy to report that she is finally experiencing some improvement. However, Myriam still has a long road ahead of her. There is a continuing need for the devotion of research and resources to uncover the causes of childhood epilepsy. As Dr. Diaz-Bustamante notes, “We have the tools to investigate the causes of epilepsy, but if there isn’t enough money for research, we can’t investigate potential treatments.” CURE agrees. We thank Dr. Diaz-Bustamante for his devotion to finding a cure for infantile spasms.

Neurosurgeon’s Work and Life Featured in The Lancet

Dr. Dennis Spencer’s journey from the cornfields of Iowa to chairmanship of the neurosurgery department at Yale is featured in a series of articles published in the journal The Lancet Neurology.

Spencer investigates intracranial networks in epilepsy, and proposes to link these with the psychiatric disorders so commonly seen as comorbidities in patients with epilepsy.

The journal profiles Spencer’s journey from the farm community of Bedford, Iowa to Yale School of Medicine, where his efforts to surgically repair devastating effects of focal epilepsy have led to new insights into the disorder afflicting nearly 50 million people worldwide. Also featured are his review articles on molecular links between epilepsy and psychiatric disorders such depression and anxiety.

People with epilepsy are at much greater risk of mental illness than the general population. “We argue that focal epilepsy is not focal but a network disorder which overlaps with other neuropsychiatric disorders,” Spencer said. “The hope is that someday we will be able to treat both simultaneously.”

Human interest story: New Brain Implant Technology is Life Changing for Patient with Epilepsy

With one glance, you would never guess what 25-year-old Aimee Buckley of Pocatello, Idaho, has been through.

She was diagnosed with epilepsy when she was 8 years old. Seizures became her routine. “I’ve lived with them almost my entire life,” Buckley said.

Her father, Lynn Buckley, said it was tough. “There literally was one year where she hardly got out of bed,” he said.

She tried every treatment her doctors offered, but nothing worked. Unfortunately, the medications she tried made her sick. At age 14, Aimee Buckley underwent resective brain surgery removing part of her brain tissue, but to no avail.

Finally, Intermountain Healthcare’s Dr. Tawnya Constantino at Intermountain Medical Center offered Aimee Buckley a new treatment called RNS, or responsive neurostimulation. In 2016, a neurosurgeon implanted the device into her skull. “When the device detects that seizures are starting, it actually administers a stimulation to that electrode in an attempt to stop the seizures from developing,” Constantino said.

Constantino said the NeuroPace option seemed like a good fit for Buckley because Dr. Constantino had already identified the general location causing Buckley’s seizures, making it easier to prevent further seizure activity. “They don’t feel it going off. They don’t hardly know it’s there,” Constantino said.

Since then, Buckley is proud to say she has almost been seizure free. She had a couple minor seizures she was not aware of but were recorded on her device.