Coming Out the Other Side, by Bill Maier

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.

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I have a unique understanding of what it is like to have epilepsy. I had seizures for 50 years before surgical intervention by those who I call my angels at Massachusetts General Hospital put an end to the chaos that was destroying my life.

While having seizures, I couldn’t understand what was happening to me but now, with a clear mind, I can look back over all those years and understand what it is like to live with epilepsy and the damage done to the individuals having the seizures, as well as to those close to them.

Epileptic seizures occur when the mind goes to war with itself. There are different intensities of neuron warfare, ranging from cold war skirmishes and firefights to all-out assaults. As in any warfare, there is always damage done. Some memory is always destroyed while the fight rages on, and this alters our perception of realty. At times, memory loss may be minute and other times significant memory loss may occur. When we come back into reality from a neuron battle that raged in our minds, we will receive your gifts of love, compassion and understanding with heartfelt thanks. Witnesses or first responders to someone regaining consciousness after a seizure should understand this and always act in a gentle, caring, non-threatening manner.

All of us must endure difficulties, some more than others. For people with epilepsy, it is very damaging when we are made to feel like we did something wrong. Remember that we did not do this on purpose or do something wrong. We couldn’t help it. Our damaged brains made us do it. Try not to make us feel worse than we already do. We are burdened with so much guilt knowing that something happened to us that is incredibly disruptive to others. No matter how groggy we are, we appreciate and are comforted when met by a gentle, caring person.

To some people, this may sound selfish. However, I can’t help feeling the way I do. The more I think about what it is like to endure the full fury of a seizure, the easier it becomes to humbly ask for help from others.

When I was in the epilepsy ward at Massachusetts General wired to fire, having seizures monitored to trace their origin and determine if I would be a good candidate for surgery, I was always greeted by a kind and caring person when coming out of a seizure. Feeling comforted and secure helped make the monitoring ordeal bearable.

There are many other difficulties that often plague a person with epilepsy. Like many others, I have been diagnosed and treated for anxiety disorders, depression, PTSD, ADD, just to mention a few. Other psychiatric and psychological disorders are too complicated for me to describe. I used alcohol as self-medication to control stress and anxiety that often triggered my seizures. Alcohol helped for a while but inevitably led to alcoholism, which aggravated my anxiety disorder and pushed me into depression. When I stopped drinking and no longer took my medicine, my seizure activity increased dramatically in both frequency and intensity. The seizures could not be controlled by prescription medications and I eventually ended up at Massachusetts General in the care of my angels who intervened to fix my brain and save me from the disastrous place I was headed to. I think of it as starting my life over with a new, fixed and improved brain. I no longer must live with the conscious and unconscious fear of having seizures. Epilepsy has a huge negative impact on both the victim of the disease as well as others associated with the unfortunate.

— Written by by Bill Maier

The Courage to Share, by Sandra Kinsella

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.

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I first encountered Louis Stanislaw and his family in 1989. Louis’ father, Joe, was my boss—and at the time, Managing Director of a rapidly expanding company in Paris, France.

The Stanislaw family was down to earth, warm, kind and generous. I had no idea that Louis began to have seizures during this time. The proof: this tight knit family of five, with mum Gussie at the helm, embraced life with unquestionable joy and unwaveringness.

The outside world never knew of Louis’ struggle, nor of Joe and Gussie’s anguish.

It was only about five years ago that I reconnected with the Stanislaws after learning of Louis’ film “On the Edge: Living with Epilepsy.”

At first, I was pained at the thought that Louis has suffered in any way—irrespective of the malaise being triggered by seizures relating to epilepsy.

However, on reflection, I came to the realization that only Louis, being the special soul he is, could carry this particular cross.

Armored with a determined will, using his God-given gifts of creativity, Louis took on the impossible: to raise awareness, understanding and empathy regarding epilepsy and to open up honest and frank discussion with both learned and nai?ve people.

I will be candid in admitting that, to date, I have yet to witness anyone—whether family, friends or strangers—suffer an epileptic seizure. Ironically however, I now find myself, within just six months, working alongside new colleagues who have either had epilepsy since childhood or endured seizures later in life.

Epilepsy, it transpires, does not choose age, ethnicity, religion or social status. Epilepsy, to put it simply, just happens.

My contribution for the reader of Louis’s book is inconsequential, except for one acute detail: within five years of exchanging periodic correspondence with the Stanislaws, I have observed Louis valiantly telling his story, at times when the darkest hour before dawn lingered for far too long.

Louis, thank you for your unselfish spirit, for helping and encouraging children, young adults, parents and families—sufferers and non-sufferers alike—to fearlessly walk the road less traveled.

— Written by Sandra Kinsella

‘Hamilton’ star fights for people with epilepsy (including his own daughter)

Al Roker and the TODAY Show came to Chicago to profile Miguel Cervantes – star of the Chicago production of HAMILTON – his wife Kelly, and their daughter Adelaide’s challenging journey with epilepsy. Also interviewed was Dr. Charles Marcuccilli, MD, PhD, director of pediatric epilepsy at University of Chicago Medicine Comer Children’s Hospital. The segment also reports on Miguel’s original song “’Til the Calm Comes” from which all proceeds from iTunes downloads go to support CURE.

Click here to view the TODAY Show segment.

Click here to download the song.

‘Hamilton’ star to put spotlight on epilepsy during North Barrington fundraiser

As reported in the Chicago Tribune:

Despite being one of the most lauded musical stage actors in the area right now, Miguel Cervantes, who plays the title role in Chicago’s production of “Hamilton,” remains humbled by the outpouring of support for his 1-year-old daughter.

And on July 10, Cervantes will be at the Wynstone Golf Club in North Barrington rallying additional support for his daughter, Adelaide, who was diagnosed with infantile spasms, according to the group Citizens United for Research in Epilepsy (Cure).

“It”s amazing to hear from people all over the world,” Cervantes said. “People are reaching out.”

At 10 a.m. July 10 at the golf course, Cervantes will start a day-long fundraiser for Cure and try to turn the spotlight on his daughter’s diagnosis.

Cervantes said epilepsy typically does not receive the same media coverage as other diseases, such as Parkinson’s, Alzheimer’s and ALS.

“So, people thank me for putting epilepsy on the map,” he said. “If my small piece of fame can help, then I’m happy to use it.”

Cervantes said his wife, Kelly, worked in event sales and also helped host events for epilepsy research in New York City before “Hamilton” came to Chicago last fall.

Their daughter has experienced ups and downs since her diagnosis, which is typical in the “the world of epilepsy,” he said.

“This is the hand we’ve been dealt. This is our new normal,” Cervantes said. “We keep fighting. We don’t have a choice.”

The fundraiser at the Wynstone Golf Club in North Barrington includes lunch, a reception dinner and awards, as well as live and silent auctions, organizers said.

Registration is open to the public. For information, call (312)-255-1801 or email events@CUREepilepsy.org.

Chicago’s HAMILTON Miguel Cervantes Debuts New Original Song ‘Til the Calm Comes

Miguel Cervantes, who plays Alexander Hamilton in Chicago’s HAMILTON, is releasing a new original song ‘Til the Calm Comes about his family, wife Kelly, and their personal journey with their baby daughter Adelaide’s struggle with epilepsy.

The song and music video will be debuted live at the 19th Annual Citizens United for Research in Epilepsy (CURE) Benefit in Chicago on May 15th, 2017, alongside the Misericordia Heartzingers Choir. The song will be available for purchase on iTunes, and all proceeds will be donated to CURE.

Miguel is raising funds for CURE on behalf of his one-year-old daughter Adelaide. Adelaide suffers from Infantile Spasms (IS), a rare childhood epilepsy syndrome that can have profoundly negative long-term consequences. Starting at 7 months, Adelaide began having dozens of seizures per day and, as a result, has severe developmental and cognitive delays.

The CURE benefit will also feature Miguel and actors from the Chicago cast of HAMILTON performing pop hits and selections from some of Broadway’s greatest shows. More than 1,200 supporters attended last year’s benefit to celebrate CURE’s impact and helped raise close to $2 million for research. The organization was founded by David and 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.

This year also culminates their successful campaign for My Shot at Epilepsy, a fundraising effort led by Miguel and Kelly Cervantes.  The My Shot at Epilepsy campaign raised over $75,000 and released a widely seen PSA and Rap Video from Miguel.

Hamilton Star Opens Up About Daughter’s Epilepsy – “My Shot at Epilepsy”

As covered by The Chicago Tribune, Miguel Cervantes—the lead in the Chicago cast of “Hamilton”—and his wife, Kelly, are opening up about their struggle with epilepsy, teaming up with CURE to raise funds to find a way to defeat epilepsy. Cervantes, who performs seven shows a week, has recorded a public service announcement about epilepsy and, along with fellow “Hamilton” cast members, is offering to go caroling with one set of raffle-winning donors, host another set of raffle winners backstage during a holiday performance of “Hamilton” and perform a private cabaret for a lucky charity auction winner with deep pockets (bidding starts at $25,000).

Read more: Click here to participate in the campaign, see the prizes and view the PSA

Athlete Helps Opponent with Epilepsy Finish Cross Country Race

October 11, 2016 — As reported by KABC (Cedar Rapids, IA) a high school athlete showed what sportsmanship really means when he helped an opponent, who has epilepsy and autism, cross the finish line. Evan Hansen, a sophomore at City High, was running in his cross country meet when he saw Adam Todd from Cedar Rapids Washington, who plays for a competing school and has epilepsy and autism, was distracted by an ambulance. When he veered off course to check it out, Evan came to his rescue. Adam’s father said his son was thrilled to finish the race and knows he has a special buddy on the course.

Read the full story

Tim Loesch and Blake Cunneen Appear on ABC 7 Chicago’s Morning News

Chicago, IL – On Saturday, Sept. 3 Tim Loesch of RE: Epilepsy and Blake Cunneen on the CURE Board of Directors appeared on ABC 7 Chicago’s morning news to discuss RE: Epilepsy’s upcoming Silent and Live Auction and the research it will support. RE: Epilepsy started in honor of Tim’s daughter Maggie, who was diagnosed with epilepsy at age 8. Over the years, they have raised more than $75,000 for CURE and hope to hit $100,000 by the end of 2016. The auction is Saturday, Sept. 10 at The Toadstool Pub in Highwood, IL. Items available for bidding include signed memorabilia from Mike Tyson, Jimmy Butler, and Ernie Banks, as well as experiences such as a suite at the United Center for a Bulls game.

Watch the interview and read the full article

Epilepsy Awareness Day at Disneyland Resort (EADDL) Announced for November 2nd and 3rd, 2016 to Bring Epilepsy Out of the Shadows

EADDL is the combined effort of one family’s thankfulness for their daughter’s recovery (now 7 years since her last seizure) and a united community’s passion for winning the fight against epilepsy.

Epilepsy Awareness and Education Expo @ The Disneyland Hotel
November 2, 2016 10am – 5:00pm
Epilepsy Awareness Day @ Disneyland
November 3, 2016 9am – park closing

Sofie Levy’s school day was almost always cut short. She’d suffer a seizure at noon and spend the rest of the day recovering from it. Medication was no help. Seven years ago, the now 16-year-old underwent surgery to remove a part of her brain that her parents called “the troublemaker” which stilled the chaotic electrical storms in her head. Sofie’s freedom from seizures inspired Sofie and her folks to create Epilepsy Awareness Day at Disneyland Resort, which returns this November for its fourth year. “EADDL needs to bring this misunderstood condition that will develop in 1 of every 26 people at some point in their lifetime, to light.”

This year EADDL will again be partnering with the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), Epilepsy Foundation of America (EFA), and Citizens United for Research in Epilepsy (CURE) in their commitment to uniting the world’s epilepsy communities. This year’s event is expected to draw approximately 80 national and regional epilepsy support groups and 2,500 people from 6 continents, as far away as the UK, Germany, South America, and Australia, to Anaheim, Calif.

“We are so proud to be working with the world recognized governing body, and almost every great support group for epilepsy advocacy,” says Candy Levy, event coordinator and most importantly Sofie’s Mom. “When Sofie’s surgeon, Dr. Gary Mathern said that his friends at the ILAE wanted to talk to us about pushing for international unity, we couldn’t wait to be a part.”

Epilepsy affects about 2.2 million Americans, according to the Institute of
Medicine of the National Academy of Sciences report. Onset occurs at any age; however, is most common in children, the elderly and those with traumatic head injuries such as athletes and veterans.

Sofie was just 5 when her parents noticed the brief blank staring spells. “She would just check out for a second or two, cognitively she was gone,” Brad says. “We couldn’t get a handle on it. We couldn’t tell if she was playing with us. Then she lost speech and we knew something was wrong.” Three years and many treatments later, the seizures only intensified.

“Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke and Alzheimer’s disease, yet it receives less than a tenth of the research funding of any one of them.” Fortunately, the Levys found that brain surgery was Sofie’s best option, not last option. They headed to UCLA for testing and surgery, and the rest is now history.

With no big name celebrity spokesperson and with centuries of stigma, epilepsy is in the shadows. Too few talk about it, often doctors miss epilepsy until a convulsion occurs. Epilepsy is not well understood, is under diagnosed, and new treatments are slow to come to market, leaving over 30% of the children with uncontrolled epilepsy.

“Sofie was lucky, we could get to the source of the seizures. Stopping the seizures allowed the other parts of her brain to function well so she could live well. Since surgery she has been seizure free, doing great in school, learned Hebrew and sign language, and has started studying Neurodiagnostics, so that she can soon be a working EEG Tech. Sofie’s father, Brad, now runs a private, in-home EEG monitoring service, catering to kids with Autism and Epilepsy. Sofie plans to follow that same road.

In addition to gathering folks this November, a new found focus for this event will be to spread awareness for the new International Epilepsy Day. “We’re hoping that all of our guests will go back to their home towns and spread the word that there is now an international day for hope. We’re just super excited,” said Brad Levy, event director.

Join over 3,000 anticipated ticketed participants as we flood the Disneyland Park in our EADDL Mickey Mouse event T-Shirts on what would ordinarily be a slow day! Also check the website for more information and for links for ticket purchases and discounted hotel rates.

www.epilepsyawarenessday.org

Brad Levy/ Event Director / 310-666-7484 / brad@epilepsyawarenessday.org

Candy Levy/ Event Coordinator/ Sofie’s Mom: candy@epilepsyawarenessday.org

Saving Savannah

 

One morning, about 20 years ago, Tracy Dixon-Salazar heard a strange sound coming from her daughter’s bedroom. She rushed in to find 2-year-old Savannah jerking violently in bed, apparently choking. But when the paramedics came, they couldn’t find an obstruction or anything else to cause her condition.

“No one could explain why I had a healthy 2-year old one day and the next day that was gone,” Tracy says.

Savannah was having seizures caused by a severe form of epilepsy called Lennox-Gastaut syndrome (LGS). LGS seizures typically start before age 4, according to the National Institute of Neurological Disorders and Stroke, and there are many types. Most LGS patients experience frequent seizures that do not respond to current epilepsy therapies. And they often have memory problems, learning deficits, developmental delays and behavioral issues.

For two-thirds of people with all forms of epilepsy, including Savannah, the cause is unknown. Treatment is even more challenging.
Read the full article