March 2018 CEO Update

It’s good that I love New York, because I get to love it a little bit longer with thanks to the Nor’easter.

More on my New York adventures in a moment, but first I wanted to remind you about a CURE webinar today for parents of school-age children. If you’re raising a child with epilepsy, be sure to register for the free webinar on Epilepsy’s Impact on Learning and School Performance. A board certified pediatric neuropsychologist will offer insights into managing cognitive-related issues experienced by many students with epilepsy.

Today’s webinar follows another, from earlier this week, on Genetic Testing to Develop Personalized Medicine for Epilepsy. (Follow this link to hear the recording.) I thank Dr. David Goldstein for leading that webinar live from Columbia University’s Institute of Genomic Medicine. As I met with David and his entire team working on CURE’s Epilepsy Genetics Initiative, I was inspired both by their dedication and advances in identifying epilepsy genes that could lead to better treatments.

CURE seeks to get the biggest impact from every dollar we collect for epilepsy research. Based on this week’s briefings in New York with CURE-funded scientists, I am especially energized about the potential for their upcoming research.

Take care,
Kate Carr

 

WEBINAR TODAY: EPILEPSY’S IMPACT ON LEARNING AND SCHOOL PERFORMANCE

Today at 2pm ET / 1pm CT, CURE will be hosting a webinar which highlights the latest research on how epilepsy impacts cognition, learning, and school performance. The webinar is free, but you need to register.

The webinar will be presented by Dr. Madison Berl, a neuropsychologist at Children’s National Hospital in Washington, D.C. Dr. Berl’s presentation will be followed by an interactive Q&A session. Some of the questions you might hear addressed include:

  • How do schools build an IEP for a child with epilepsy?
  • Are there services available to help my child transition into adulthood?
  • What laws are in place to support my child?

 

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

CURE media mention: Washington holds second race for epilepsy

Over a hundred and fifty people toed the line in Washington, North Carolina this Saturday morning.

The community gathered for a 5k and half marathon to raise money for epilepsy research. Nonprofit organization CURE (Citizens United for Research in Epilepsy) was the beneficiary in the race.

The money raised will go into searching for a cure and raising awareness for epilepsy.

“My personal goal here for the event is to educate the public and depending on certain variables people with epilepsy still can have a job,” said Race for Epilepsy founder and organizer, James Peterson.

‘Cure Epilepsy’ is set to donate around $2000.

‘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-backed research finds biomarker to halt seizures post brain injury

As reported by Katie Pfaff, BioWorld MedTech:

Research may have pinpointed a biomarker for epilepsy after stroke, a condition with unpredictable onset and few treatment options. Funded by nonprofit Citizens United for Research in Epilepsy (CURE), the Italian-based research team has discovered a protein in animal model tied to development of seizures following brain injury.

Lead by Annamaria Vezzani, researchers at Milan’s Mario Negri Institute for Pharmacological Research have identified the biomarker HMGB1, which was found to spike among studied animals before development of epilepsy. Research was conducted in a rat model and may point to possible inception of epilepsy after injury to the brain. HMGB1 is commonly associated with neuroinflammation in the brain after injury and may mean such inflammation can be treated with medication to hold off seizures or decrease their severity.

“With this research, Vezzani and her team have provided hope that a treatment for preventing acquired epilepsy before it occurs is on the horizon,” said Kate Carr, CEO, CURE.

Friends honor Union student who died from epilepsy

As reported by Zachary Matson, Daily Gazette:

Union College student Alex Askenazy told his friends he planned to design new drugs and medical treatments — possibly for epilepsy, the disorder that claimed his life on Oct. 8.

“He wanted tattoos of the molecular structure of his new drugs,” said Union sophomore Erick Landreth, who lived with Askenazy during their freshmen year. Phil Askenazy, Alex’s dad, said the tattoo claim might have been a little puffery.

Askenazy died in his Union dorm from Sudden Unexpected Death in Epilepsy (SUDEP), a little-understood complication of epilepsy that affects about 1 in 1,000 adults with the disorder each year. But his friends are hoping to do what they can to carry out Askenazy’s mission, specifically by raising around $4,000 — so far — for SUDEP research.

February 2018 CEO Update

Greetings from snowy Chicago!

Over the past few months, I hope that you have noticed improved communications to our friends and supporters in the epilepsy community. We are working diligently to provide you with more updates and information. Starting this month, we will begin to provide an update from the CEO and a separate message from our Chief Scientific Officer, Dr. Laura Lubbers. We’ve heard from a number of you that Laura’s message last week was greatly appreciated.

My updates will address issues that are important to the epilepsy community. I’ll feature news about our operations and research resources that are freely available to you. With that in mind, I’m pleased to announce that CURE’s online webinar series is expanding to 10 or more topics this year. Encouraging advances in epilepsy research will be presented in non-technical terms. You’ll hear from highly-accomplished researchers and get a chance to “ask the expert.” All of our education events are funded by the generosity of CURE donors, so there is no charge to attend. Our next webinar, on March 8, will address how to deal with epilepsy’s impact on learning and performance at school. Register

A related announcement: More Scholarships! Once again, CURE will be offering scholarships up to $5,000 to people impacted by epilepsy. Learn More

Of course, I’ll also do my best to keep you informed about meaningful (and often fun) ways to support epilepsy research (like our HAMILTON fundraiser).

I’ve been serving in executive roles at non-profit organizations for over two decades. I joined CURE as CEO last July. If we haven’t yet had a chance to meet, I hope we’ll get that opportunity at an upcoming CURE event. Meanwhile, please send me a note if you have feedback or ideas on how to advance our shared mission.

Wishing you and your loved ones a great day,
Kate Carr

 

UPCOMING WEBINAR: EPILEPSY’S IMPACT ON LEARNING AND SCHOOL PERFORMANCE

Featured Presenter: Madison Berl, PhD, ABPP, Neuropsychologist at Children’s National Hospital in Washington, D.C.

Date/Time: Thursday, March 8, 2018 / 1-2 PM CST

Summary: There are an estimated 470,000 young people under the age of 18 living with epilepsy in the United States and while many experience no adverse effects related to their learning or school performance, others may have cognitive issues related to their seizures, ranging from minor to severe. Several factors may contribute to these learning difficulties: seizure type and frequency, developmental disorders, medications, and psychosocial factors. This webinar is intended for the general public and will outline some of these cognitive-related issues that many young people with epilepsy experience, discuss the latest research on cognition and epilepsy, as well as identify some potential resources that may be available to individuals and their families.

CURE’s Leaders in Epilepsy Research Webinar Series provides cutting- edge information about new discoveries, research, and treatments in epilepsy. Researchers discuss the real-life challenges faced by the epilepsy community and potential resources to address their needs.

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.

Gene playing major role in neurological condition found

This genetic discovery included the efforts of CURE grantee Minghsan Xue.

Researchers are closer to solving the puzzle of a complex neurological condition called 15q13.3 microdeletion syndrome. Individuals with this condition are missing a small piece of chromosome 15 that usually contains six genes, but which one of the genes is responsible for the clinical characteristics of patients has not been clear. In this study, a multidisciplinary team of researchers at Baylor College of Medicine and Texas Children’s Hospital has identified in a mouse model OTUD7A as the gene within the deleted region that accounts for many characteristics of the human condition. The researchers also discovered that mice deficient in the gene Otud7a have fewer dendritic spines, small protrusions involved in neuron communication, which might be related to the neurological deficits.

The report appears in the American Journal of Human Genetics.

“Identifying the gene within a deleted region of a chromosome that accounts for the clinical characteristics we see in patients is very important,” said senior author Dr. Christian Schaaf, assistant professor of molecular and human genetics at Baylor College of Medicine and the Joan and Stanford Alexander Endowed Chair for Neuropsychiatric Genetics at Texas Children’s Hospital. “If we want to get to the point where we can treat patients, we need to know which gene or genes to target. That is the big picture question behind this study.”