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.

Human interest story: Girl is Seizure Free After Treatment for Autoimmune Epilepsy

In the Fall of 2010, Toya and her husband Dr. Anthony Johnson, pastor at Prayer Temple Missionary Baptist Church in Redford, Michigan, were getting ready to go to church. Their plans took a dramatic turn when their 5-year-old daughter, Alyse, had the family praying on their way to a local emergency department after her body started shaking, her eyes rolled back and her mouth shifted to one side.

After two weeks of seizures, doctors prescribed an anti-seizure medication, but Alyse still had seizures daily. She was treated for epilepsy with additional antiepileptic drugs (AEDs) and increased doses but her condition worsened. She started losing her ability to walk and talk.

In September 2014, Alyse was evaluated by Mitchel T. Williams, M.D., pediatric neurologist at the Children’s Hospital of Michigan, who specializes in the developing field of neuroimmunology and epilepsy.

“Inflammation plays a role in epilepsy. Anywhere from 10 to 20 percent of intractable focal epilepsy cases are due to an underlying autoimmune cause. That is a huge percentage,” says Dr. Williams.

After finding out that family members had autoimmune disorders, Dr. Williams suspected that in Alyse’s case, there was such an underlying cause making the steroids ineffective in fully addressing her issues.

Further testing showed that Alyse had seizure activity during 85 percent of her sleeping time. The treatment plan? Intravenous immunoglobulin (IVIG) for autoimmune epilepsy which involves administering a sterile solution of concentrated antibodies extracted from healthy donors into a vein. “IVIG does not suppress the immune system, it bolsters it,” says Dr. Williams. “You are gaining antibodies from many other people. It in essence tames the immune system and diffuses the abnormal response.”

Since her IVIG treatments over 3 year ago, Alyse takes fewer antiepileptic drugs and she continues her IVIG treatments twice a month at the Children’s Hospital of Michigan. Thanks to the success of the IVIG treatments, Dr. Williams has also weaned Alyse off the steroids which caused side effects such as weight gain and diabetes.

Paint the World Purple with CURE

Purple Day® is March 26, and CURE invites you to paint Facebook, Twitter, and Instagram purple! CURE will be showcasing art created by our community from March 25-31. Please submit your ORIGINAL artwork to info@CUREepilepsy.org by March 16 for consideration.

You can make a difference. Let’s get the world talking about epilepsy, shatter the myths, and remind those affected – they aren’t alone.

Not artistic? You can still participate!

Create a Facebook fundraiser and raise important funds for epilepsy research. Or share CURE’s social media posts throughout the last week of March. The more people learn about epilepsy, the more understanding there will be!

Purple Day® is a registered trademark owned by The Anita Kaufmann Foundation.


Original artwork by Richard Davis

‘Hamilton’ star and his wife focus on hope while raising awareness for epilepsy

This article features insight from CURE Chief Scientific Officer Dr. Laura Lubbers.

Miguel Cervantes felt numb.

He had just finished his third, and most critical, audition in New York City for “Hamilton: An American Musical,” the most popular Broadway show of our time. He left it all on that audition stage. Everyone within earshot stopped what they were doing to watch or listen. It was that powerful.

Cervantes understood it was his once-in-a-lifetime shot to portray the hit musical’s lead character, Alexander Hamilton, in the upcoming Chicago show. It could take him from relative obscurity to realized dream. Still, he had one unshakable thought on his mind.

His thoughts focused on his baby daughter who had just been hospitalized with an unknown ailment. And an unknown future.

At 9 months old, Adelaide was diagnosed with epilepsy, confirmed later as a severe, incurable form known as Infantile Spasms. It’s a rare epilepsy syndrome that can have profoundly negative long-term consequences including severe developmental and cognitive delays.

“Miguel and Kelly are facing many unknowns, which can be disappointing,” says Laura Lubbers, chief scientific officer for Citizens United for Research in Epilepsy, or CURE. “Infantile Spasms is rare, but clearly very catastrophic.”

The couple has partnered with the Epilepsy Foundation and CURE to host the #MyShotAtEpilepsy Challenge to promote awareness and raise funds. It encourages supporters to strike a Hamilton-like pose, take a photo, share it on social media and make a donation to the cause.

Skate for Alex

 

Alex Askenazy, a sophomore at Union College, passed away on October 8, 2017 due to complications from epilepsy. He was a biochemistry major who served as goalie on the school’s club hockey team and president of the fencing club.

Alex’s fraternity organized Skate for Alex, a fundraiser held February 11 at the school’s skating rink, to honor his memory.

Learn more about Skate for Alex through local news coverage:

 

Alex’s friends and family are continuing to fundraise to support our shared mission to find a cure for epilepsy. Please help them honor Alex’s memory with a contribution to CURE. Your tax-deductible gift will fund critical epilepsy research and make a difference in the lives of the 3 million Americans and 65 million people worldwide touched by epilepsy.

CURE Mention: Valentine’s Day Epilepsy Philanthropy

In the town of Monselice in the Province of Padua, Italy, there is a unique tradition held on Valentine’s Day each year. In a small chapel at St. George’s Oratory, there is a special ceremony in which children receive a small charm, a Valentine’s key, believed to ward off epilepsy. According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and can affect people of all ages. Sometimes epilepsy, which is another term for “seizure disorders” can be traced to a brain injury or a family history, but often the cause is unknown.

Perhaps you know someone who suffers from seizures and has experienced the life-altering effects of epilepsy, which can prevent proper growth and development, remove independence or curtail activities such as driving or working. This Valentine’s Day may be a reminder for you to reach out to them and find a way to help. It may be as simple as driving a friend to an appointment or running an errand for a weary caregiver. Your expression of philanthropy could also be to make a contribution to an organization doing research to find a cure for the disease. CURE, which stands for Citizens United for Research in Epilepsy, can direct your gift to a variety of research efforts targeting this disease.