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.

Virginia’s Seizure Notebook

BY KATE COOPER, VIRGINIA’S MOM

On August 14, 2004, my 17-month old daughter Virginia suffered her very first seizure. At first it was subtle: a barely perceptible twitch of the eyes. But it escalated quickly, and within 24 hours she was admitted to the ICU.

She’s had more than 13,000 seizures since that day.

For years I carried a notebook and jotted down the date and time of each and every seizure. Every nurse, every doctor, every concerned stranger asked the same questions: When was her last seizure? How often does she have them? How long do they last?

That notebook made me feel like I had answers. But here’s the problem: All of these questions assume that we’re dealing with seizures in a vacuum. And we now know that epilepsy is not a series of isolated incidents; it is a cumulative tragedy. With each and every seizure, Virginia suffers more brain damage.

Every page of that notebook represents compromised potential, lost opportunities, missed milestones. Every notation changes who Virginia is as a daughter, a sister, a student, an athlete and a friend.

I used to count individual seizures. But I finally realized that even one seizure is one too many. And I stopped counting.

Twenty years ago, Susan Axelrod stopped counting, too. She started CURE and has since helped raise more than $50 million for epilepsy research. But epilepsy research is still tragically underfunded. In fact, even though it affects 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined, epilepsy receives 60% less funding than each of these diseases.

As the year comes to an end, please resolve to help us close this funding gap. Let’s stop counting seizures and start counting seizure-free days instead.

Join us in the quest for a cure!

A MESSAGE FROM CURE’S CEO

Susan and LaurenThe story of CURE is the story of people coming together to make a difference, to stop suffering – whether that suffering comes from seizures or from side effects of seizure medication – and to embark on a quest to end epilepsy once and for all.

Nearly 20 years ago, Susan Axelrod and a group of parents came together to form CURE. Susan was heartbroken by the devastating ways in which she saw epilepsy impacting her daughter Lauren. She was also deeply frustrated by the lack of options available for parents who wanted to fund research that would move science closer to a cure.

In the years since CURE was formed, many have joined Susan on this quest, and remarkable strides have been made. Since 1998, no private organization has provided more funding for epilepsy research, and recent advances in science are making exciting things possible.

This year CURE provided 10 patients with a genetic diagnosis for their epilepsy through our groundbreaking Epilepsy Genetics Initiative that is driving precision medicine forward, identifying new genetic causes and targeted therapies. We awarded research grants totaling more than $1.5M to 11 investigators, including the new Sleep & Epilepsy Award. And we helped provide 39 wearable seizure-tracking Apple Watches to people with epilepsy through the EpiWatch program, in partnership with Johns Hopkins University.

Momentum is building, but we need your continued support to ensure it keeps up.

Donate

We must not stop until a cure for epilepsy is found for all the millions who still need it. Together, we CAN make a difference. We are committed to working relentlessly to find a cure, and we hope that you will join us. Thank you!

Sincerely,

Kate Carr
Chief Executive Officer, CURE

Remembering the loved ones lost to SUDEP

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.

Isaiah’s story inspires us to do more

“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.

IsaiahIt’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 it comes to Infantile Spasms, families face difficult choices

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.