In this month’s update, we have a very important question to ask: are you ready to take your shot at epilepsy?
This November enter our Epilepsy Awareness Month raffle to help support groundbreaking research and the chance to win a fantastic prize package including: tickets to the final Chicago Hamilton performance, meals at award winning Chicago restaurants, accommodations, and more. Stay tuned – we’ll announce more details in the coming weeks.
The exciting news doesn’t stop there! In this update, please also find information on:
SUDEP Action Day is a global event whose purpose is to educate the epilepsy community and beyond about the risk of Sudden Unexpected Death in Epilepsy (SUDEP). Join the movement on Wednesday, October 23 and encourage your friends and family to take #5forEpilepsySafety – spend 5 minutes learning about SUDEP and preventative measures patients and families can take.
Watch Real Talk: Speaking Up About Life with Epilepsy
This week, four young professionals joined us live to discuss navigating careers, dating, and friendships while living with epilepsy. You can catch the recording of this insightful discussion now on our website!
Your Friends Can Fight for a Cure on #GivingTuesday
On Tuesday, December 3, rally your Facebook friends to donate to cutting-edge epilepsy research that will push us closer to a cure. Setting up your own #GivingTuesday fundraiser is easy with Facebook! Follow these step-by-step instructions or click here to kick-off your campaign and let the world know how important funding research is to you.
Join us on Monday, November 18 as we honor children whose lives have been touched by epilepsy and the researchers who propel us toward a cure.
This year listen to performances by Nils Lofgren – Rock and Roll Hall of Fame inductee, Miguel Cervantes – star of Chicago’s Hamilton, and Musicality – renowned Chicago-based youth vocal group will make the evening soar.
Exciting and Informative CURE Events at Epilepsy Awareness Day at Disneyland!
Stop by the CURE booth at the Epilepsy Awareness Day at Disneyland expo to hear interesting interviews with researchers and physicians about the latest promising studies and therapies.
In addition, tell us how your life would change if there was a cure for epilepsy. Share your “When You Wish Upon a Cure” story and you’ll have the chance to be one of 10 individuals to be interviewed by Seizing Life podcast host, award-winning blogger, and advocate Kelly Cervantes!
The CURE office is buzzing with excitement for all the upcoming events and educational opportunities on the horizon. It warms our hearts to see the epilepsy community coming together both on and offline to speak up in support of greater research funding and public education about epilepsy.
While 3.4 million Americans are currently impacted by epilepsy, the everyday experience of living with this condition remains largely in the shadows. To shed light on this “invisible” condition, a panel of individuals with epilepsy will speak to building careers, relationships, and more. Moderated by CURE Board Member and activist Kelly Cervantes, this discussion promises to be a unique, stigma-busting event!
Mark your calendars: this year’s spectacular CURE 2019 Annual Chicago Benefit is on Monday, November 18!
We’re celebrating the innovative epilepsy researchers whose careers CURE has helped launch for over 20 years. These are the groundbreaking scientists who are helping break open new avenues of investigation in the field of epilepsy research, giving hope to those impacted by the condition, and pushing us closer to a cure.
Our amazing performers for this year’s benefit are Rock and Roll Hall of Famer Nils Lofgren, star of Chicago’s Hamilton Miguel Cervantes, and renowned Chicago-based vocal group Musicality.
California Events: CURE’s Day of Science: Epilepsy Conversations and Epilepsy Awareness Day at Disneyland
On Saturday, September 21, people with epilepsy and their caregivers have the opportunity to ask a panel of doctors and researchers their questions during Day of Science: Epilepsy Conversations at the Children’s Hospital of Orange County. At this free event, leading experts will address attendees’ questions on the latest research as it relates to new epilepsy treatment options, surgery, genetics, and more. Also, enjoy small-group discussions with the panelists over lunch.
Day of Science: Epilepsy Conversations is made possible thanks to the generous support of the BAND Foundation, Eisai, and Greenwich Biosciences. This event is also hosted in partnership with the Epilepsy Support Network of Orange County.
Paint the park purple at Epilepsy Awareness Day at Disneyland! On November 4 and 5, join us at the expo to access epilepsy resources while learning about new treatment options and devices. Then head to Disneyland Park on November 6 to enjoy the rides, build lasting friendships, and spread epilepsy awareness.
We’ll announce our fun booth activities soon, so stay tuned!
This two-part webinar and live Q&A series onAugust 13 and September 10 provides a detailed look at current and future rescue medications and their uses. Whether you’re an individual with epilepsy, parent, caregiver, teacher, or someone who regularly interacts with those impacted by epilepsy, please join us for these important presentations.
This webinar is generously supported by the BAND Foundation.
Download the CURE Epilepsy Research News Mobile App
The latest epilepsy discoveries are now at your fingertips with the CURE Epilepsy Research News mobile app. The app provides you with studies from investigators and researchers dedicated to building a world without epilepsy.
Never miss an epilepsy discovery! Download the free CURE Epilepsy Research New app today.
Display your commitment to finding a cure for epilepsy every time you use your phone with CURE PopSockets! Popsockets are expandable phone grips and mounts you can use to hold your phone, prop it up, and manage your cords.
Become a Poptivist by purchasing or designing a CURE Popsocket. When you do, 50% of sales support our mission to fund cutting-edge research.
Day of Science: Epilepsy Conversations and Live Q&A in Orange County
On Saturday, September 21 ask a panel of doctors and researchers your questions about epilepsy at Day of Science: Epilepsy Conversations and Live Q&A. At this free event, leading experts address your questions on the latest research as it relates to new epilepsy treatment options, surgery, genetics, and more. Also, enjoy small-group discussions with the panelists over lunch.
Day of Science: Epilepsy Conversations and Live Q&A is made possible thanks to the generous support of the BAND Foundation, Eisai, and Greenwich Biosciences. This event is also hosted in partnership with the Epilepsy Support Network of Orange County.
Discover when to consider epilepsy surgery and what recent advances have been made in this field in our upcoming free webinar, Wednesday, July 10. Dr. Kate Davis from the University of Pennsylvania will address these topics and share how to approach your doctor about surgery.
This webinar is supported by the generosity of the BAND Foundation.
Have fun in the sun while raising vital funding for epilepsy research by hosting a CURE Champion event! From lemonade stands to block parties, you can use your creativity and skills to spread awareness about the desperate need for a cure for epilepsy.
Not sure where to start? Our Outreach Team is here to help! Send them an email at firstname.lastname@example.org to kick off your summer fundraising event.
The CURE Champions program is supported in part by Greenwich Biosciences.
Become a Monthly Donor to Impact Epilepsy Research All Year!
Support groundbreaking epilepsy research throughout the year by becoming a monthly donor! Your donations build-up over time, which means any recurring donation can make a big impact, helping to transform lives.
Set up your monthly donation through our website by checking the “Recurring Gift” box when you donate.
Beth Lewin Dean ’90 didn’t know it when she attended Cornell College, but her path would lead her to work that would impact millions of lives.
She recently accepted the job as the chief executive officer of Citizens United for Research in Epilepsy (CURE)–which she says is the No. 1 non-governmental research agency for epilepsy.
“It’s a very rewarding job, knowing how prevalent epilepsy is, knowing how underfunded epilepsy research is, and knowing the impact our work can have on someone’s life,” Lewin Dean said. “The ability to help drive change makes you want to get up and come to work every day.”
The nonprofit organization is at the forefront of epilepsy research. It has already raised more than $60 million to fund research grants and other programs. According to CURE’s website, mortality rates among people with epilepsy are three times the rate of the general population, and sudden death rates are more than 20 times higher. Lewin Dean says her Chicago-based team hopes to get more people talking about the disease, which impacts more people than many realize.
“There is a huge stigma around epilepsy,” Lewin Dean said. “Three-point-four million people in the U.S. have epilepsy but people don’t talk about it. There’s shame or embarrassment or they are worried it will affect their job, friendships, or relationships.”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Dr. Tore Eid’s CURE-funded research aims to understand how gut bacteria can impact seizure development, inflammation, and neurodegeneration.
The team found increased levels of certain amino acids, potentially made by gut bacteria, in the epileptic brain regions of individuals with focal epilepsies.
Short-term treatment with these amino acids reduced spontaneous seizures in a rat model of epilepsy, while a long-term treatment worsened seizure frequency.
Dr. Eid’s studies have the potential to develop epilepsy treatments such as dietary interventions and other safe manipulations of gut bacteria.
CURE grantee, Dr. Tore Eid, and his team at Yale University, are conducting exciting research to understand how gut bacteria can influence the development and manifestation of seizures. This impactful work, funded by the Heldman-Kirshner family grant in honor of Alex Heldman, could lead to simpler and safer treatments for epilepsy.
Over 500 different types of bacteria live in our gut alone.1 This dense collection of bacteria, called gut microbiota, helps us digest food, provides important nutrients, builds immunity, and protects us from harmful pathogens. Disruptions to the gut microbiota play a role in many diseases including irritable bowel disease, colitis, and diabetes. There is also evidence that gut microbiota problems are linked to anxiety, depression, and autism spectrum disorders.2 How and whether these bacteria influence epilepsy development and progression is not very well studied. There is some evidence that the ketogenic diet, which is effective in reducing seizure frequency in a number of different epilepsies, may work by modifying the gut microbiota.3
To better understand the role gut bacteria may play in epilepsy, Dr. Eid and his team analyzed brain fluid samples from people with focal epilepsy. They found that epileptic brain regions had increased levels of certain amino acids called branched chain amino acids, which can be made by gut bacteria. Levels of some of these branched amino acids increased in the brain three hours before a spontaneous seizure occurred, while levels of other branched amino acids increased an hour before. This may indicate that there is a “fine-tuning” of these amino acids happening within the body which potentially impacts seizure occurrence.
Next, the team fed these branched chain amino acids to a rat model of epilepsy they developed. A short-term treatment decreased spontaneous seizures while a long-term treatment worsened seizure frequency and caused neuronal loss in an area of the brain called the hippocampus.4 These results provide evidence that molecules derived from gut bacteria can impact brain chemistry and seizure development.
The team is also interested in understanding how bacteria living in the gut can influence epilepsy development and progression in the brain, focusing on a large nerve called the vagus nerve. This nerve allows the brain and the gut to directly communicate with each other. Dr. Eid’s team has developed techniques to selectively stimulate or suppress signaling only through the afferent vagus nerve, which transmits messages from the gut to the brain, without affecting the efferent nerve, which transmits messages from the brain to the gut and other organs.
In future studies, Dr. Eid and his team will perform careful manipulations of gut bacteria in a rat model of epilepsy by feeding the animals specific types of bacteria. The types of bacteria the team plans to use make molecules which can influence brain chemistry and thus potentially affect seizures. The team will study the effect of this treatment along with afferent vagal nerve stimulation/suppression on seizure development, brain inflammation, and neuronal loss in the rats.
These studies have the potential to impact epilepsy treatment through safe manipulations of gut bacteria through, for example, dietary interventions, probiotics, or antibiotics.
1 Eckburg PB et.al. Diversity of the human intestinal microbial flora, Science. 2005 Jun 10;308(5728):1635-8 2 E.Y. Hsiao et.al Microbiota modulate behavioral and physiological abnormalities associated with neurodevelopmental disorders, Cell. 155 (2013) 1451-1463 3 Olson CA, Vuong HE et. al. The Gut Microbiota Mediates the Anti-Seizure Effects of the Ketogenic Diet, Cell. 2018 Jun 14;173(7):1728-1741.e13. doi: 10.1016/j.cell.2018.04.027 4 Gruenbaum SE, Dhaher R et. al., Effects of Branched-Chain Amino Acid Supplementation on Spontaneous Seizures and Neuronal Viability in a Model of Mesial Temporal Lobe Epilepsy, J Neurosurg Anesthesiol. 2019 Apr;31(2):247-256
Greetings! This month, we’re excited to discuss a hot topic in the epilepsy community: dietary therapies, including the ketogenic diet. You’ll have the opportunity to dive into the latest research and the clinical application of these treatment options in an upcoming webinar, the next episode of Seizing Life, and June’s CURE Discovery article.
On the next episode of Seizing Life, launching Wednesday, June 5, discover answers to common questions about using the ketogenic diet to help control seizures. See a preview of this episode now, featuring registered dietitian Robyn Blackford and advanced practice nurse Breanne Fisher from Ann & Robert H. Lurie Children’s Hospital of Chicago.
Webinar and Live Q&A on Epilepsy and Dietary Therapies: How What You Eat May Help Control Seizures
Explore the research supporting dietary epilepsy therapies in a free webinar on Thursday, June 13. Dr. Jong Rho from the University of Calgary and Dr. Eric Kossoff from Johns Hopkins University will explain how patients and caregivers can work with their doctors to determine if these therapies are right for them.
This webinar is supported by the generosity of the BAND Foundation.
Shining a Spotlight on Epilepsy at Broadway Sings for CURE
Calling all runners! Join Team CURE for the Chicago Half Marathon and the New York Marathon. As a CURE Champion with our running group, you’ll raise critically-needed funds to support research while spreading vital awareness at races in these two iconic cities.
Your Facebook Friends Can Help Create a World Without Epilepsy
Amelia Murray is determined to use her passion for hockey to fund critically-needed research with her Shutouts for Seizures program. In 2014, she brought this initiative to Union College, choosing to raise funds for CURE. In only 4 years, Shutouts for Seizures has raised nearly $35,000.
Greetings! As the recently appointed CEO, I have the incredible privilege of helping the team advance our mission of funding research to find a cure and sharing information along the way. I look forward to keeping the community up-to-date on the latest research news, opportunities to learn, and unique CURE events while working diligently with our Chief Scientific Officer Dr. Laura Lubbers to drive epilepsy science forward.
I’m excited to highlight events, news, and community members in this update, and share more great news in the months to come. And if you’d like to learn a little more about me, head over to our website.
If you are in Boston, Chicago, or New York, please find information about several exciting events I hope to meet you at this year!
Read on to learn about:
June 13: Webinar and Live Q&A on Epilepsy and Dietary Therapies: How What You Eat May Control Seizures
TED Talk Discussing the Facts of Sudden Unexpected Death in Epilepsy (SUDEP)
For individuals with epilepsy – particularly if their seizures are not controlled by available medications alone – dietary therapies have the potential to help. Join us for a free webinar on these therapies Thursday, June 14 at 1:00PM CT.
The presenters Dr. Jong Rho from the University of Calgary and Dr. Eric Kosoff of Johns Hopkins will discuss the ketogenic diet and other evidence-based dietary options. These neurologists will examine the research supporting dietary epilepsy therapies as well as how patients and caregivers can work with their doctors to determine if these therapies are right for them.
This webinar is supported by the generosity of the BAND Foundation.
TED Talk Discusses the Facts of Sudden Unexpected Death in Epilepsy (SUDEP)
SUDEP is one of the most devastating potential consequences of epilepsy, but MIT Professor and Empatica Founder Rosalind Picard says artificial intelligence (AI) may help. Discover more information about SUDEP and how the epilepsy field is exploring AI as a way to save lives.
Spread awareness about SUDEP: share this video on Facebook and Twitter.
This month CURE Champion Lacey Shirk and a group of her close friends laced up their sneakers and ran through the streets of downtown Indianapolis for the 43rd annual OneAmerica Mini-Marathon. Together they raised nearly $2,700 to support CURE and our research efforts.
Lacey had a little extra inspiration and motivation for running this 13.1 mile race: her best friend’s son, 2-year-old Cohen who has epilepsy.
Cohen started having infantile spasms when he was 6 months old. His doctors discovered he had a stroke sometime around birth, leading to these spasms. Cohen has undergone intensive physical therapy 5 times a week and has made amazing progress on walking, standing, and using his left hand.
Lacey aims to help create a world without epilepsy for Cohen and the other 3.4 million people in the US affected by raising awareness and supporting innovative research.
1:26 The Art of Epilepsy is an exhibition and cocktail reception honoring the work of Dr. Steven Schachter, Professor of Neurology at Harvard Medical School, and Dr. Kevin Staley, CURE Post-Traumatic Epilepsy Investigator and Chief of Pediatric Neurology at Massachusetts General Hospital.
The artwork tells unique stories about the seizure state, the psychosocial impact of living with epilepsy, and the medical technology involved in evaluating people affected by epilepsy.
On Saturday morning ask a panel of doctors and researchers your questions at CURE’s Day of Science. At this free event, panelists will address your questions on the latest research as it relates to new epilepsy treatment options, surgery, genetics, and more. After the panel, enjoy small-group discussions with the panelists over a provided lunch.
Day of Science is made possible thanks to the generous support of the BAND Foundation.
Join Team CURE and race toward a world without epilepsy at this Chicago Half Marathon/5K! When you join our team, you become a CURE Champion helping fundraise to support cutting-edge epilepsy research.
Raise $250 and above to receive a Team CURE Race Hat.
Raise $500 and above to receive a Team CURE Performance Race Shirt.
Raise $1,000 and above to receive a Team CURE Performance Race Jacket.
Raise $2,500 and above to receive free entry into the 2019 CURE Benefit.
On Monday, June 24, Broadway stars are coming together for an evening of dazzling performances at Broadway Sings for CURE!
This event will be hosted by Miguel Cervantes, star of Chicago’s HAMILTON, who understands all too well how devastating epilepsy can be. His daughter, Adelaide, was diagnosed with a severe form of epilepsy called infantile spasms at 7 months old.
Stay tuned – we’ll announce the performers who will #SingForCURE soon.
Race to fund epilepsy research when you join Team CURE at the 2019 TCS New York City Marathon! Represent the 3.4 million Americans who are impacted by epilepsy at this iconic race through all 5 boroughs.
When you join Team CURE, you’ll receive:
Free race entry ($295 value)
Team CURE shirt
Personal fundraising page
Regular communications and motivational stories from CURE
Chicago (April 8, 2019) – Citizens United for Research in Epilepsy (CURE) announced today the appointment of Beth Lewin Dean, MBA, MPA as the new Chief Executive Officer. Beth brings 17 years of extensive experience within the epilepsy field, which has been driven by her strong commitment to understanding the needs, aspirations and hopes of patients and their loved ones.
“We are absolutely delighted to bring Beth to CURE,” said Ann Benschoter, CURE Board Chairman. “The board and I were impressed with Beth’s strong track record of engaging with physicians, researchers, thought leaders, and patient advocacy groups. Additionally, we were attracted by her passion for volunteerism and her dedication to patients that is illustrated by her many years of partnering with the epilepsy nonprofit sector.”
Following a national search, the search committee selected Beth. Not only did she demonstrate strong analytical skills and leadership capabilities, but the process also revealed her deep belief in CURE’s mission. Colleagues have praised her for both her strategic leadership and her ability to foster collaboration and strong teamwork in both the corporate and voluntary sectors.
Beth’s background combines exceptional academic and professional credentials. After graduating from Cornell College, Beth continued her education, earning an MPA from Indiana University and an MBA from the University of Chicago Booth School of Business. Her professional experience includes marketing executive roles at Lundbeck and Abbott Laboratories where she was well-known and respected for her work managing brands and the relationships formed with patient groups and disease-state thought leaders.
“I am highly motivated by CURE’s mission of advancing science and research that will lead to a cure,” said Beth Lewin Dean. “I look forward to working with the entire CURE community of supporters, patients, families, and researchers to continue to accelerate CURE’s research efforts toward our shared goal—a cure for epilepsy.”
“Beth’s impressive background and enthusiasm will help accelerate CURE’s mission to cure epilepsy, transforming and saving millions of lives,” said Susan Axelrod, CURE founder. “We are thrilled that Beth will be leading CURE forward.”
The mission of Citizens United for Research in Epilepsy (CURE) is to find a cure for epilepsy by promoting and funding patient-focused research. Since its inception in 1998, CURE has raised over $60 million to advance its goal of no seizures and no side effects. To date, CURE has awarded more than 220 cutting-edge research projects in 15 countries around the world. CURE is the leading non-governmental agency fully committed to funding research in epilepsy. For information about CURE, please visit our website at: www.CUREepilepsy.org or contact us at: info@CUREepilepsy.org.