CURE Update: Webinar on Dietary Therapies, Exciting Events, and Happenings in the Epilepsy Community

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:

Sincerely,

Beth Lewin Dean

Beth Lewin Dean, CEO

June 13: Webinar and Live Q&A on Epilepsy and Dietary Therapies: How What You Eat May Control Seizures

Learn More | Register Now

Epilepsy and DietFor 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)

Watch Now

SUDEP Ted TalkSUDEP 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.

New Episodes: Seizing Life, a CURE Podcast

Listen Now

Seizing Life, a CURE PodcastCatch up on the latest episodes of the CURE podcast Seizing Life! In April, we explored:

You can find Seizing Life on your favorite podcasting app or on our website, www.seizinglife.org.

CURE Champion Spotlight: Lacey Shirk Runs to Honor Her Best Friend’s Son

Become a CURE Champion

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.

CURE Boston Events

1:26 The Art of Epilepsy Art Exhibition
Get Tickets

1:26 The Art of Epilepsy1:26 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.

Day of Science
Register

Day of ScienceOn 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.

CURE Chicago Events

Ella’s Race
Learn More | Register | Donate

Ella's RaceJoin us for the 4th annual fun run/walk dedicated to Ella and everyone touched by epilepsy. Ella is 9 years old and has a severe form of epilepsy, which was diagnosed days after her first birthday.

Ella’s Race is a 2.6 mile fun run and 1 mile walk featuring a silent auction for kids and adults alike. Refreshments will be served following the run/walk.

Chicago Half Marathon/5K
Learn More

Chicago Half MarathonJoin 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.

To register, email Brandon Laughlin at events@cureepilepsy.org.

CURE New York Events

The Broadway Sings for CURE Benefit
Learn More | Sponsor | Tickets | Donate

Broadway Sings for CUREOn 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.

New York City Marathon 
Register

Chicago Half MarathonRace 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
  • Private, post-race social event

Upcoming CURE Events

May 10: 1:26 The Art of Epilepsy Reception and Art Exhibition – Boston, MA
May 11: Day of Science – Boston, MA
May 19: CURE Jump-A-Thon – Chicago, IL
June 02: Ella’s Race – La Grange, IL
June 13: Epilepsy and Dietary Therapies Webinar – Online
June 24: Broadway Sings for CURE – New York, NY

View All Upcoming Events

Citizens United for Research in Epilepsy Appoints Beth Lewin Dean as Chief Executive Officer

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.”

ABOUT CURE

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.

The Epilepsy Genetics Initiative: Systematic Reanalysis of Diagnostic Exomes Increases Yield

Featuring CURE’s Epilepsy Genetics Initiative

OBJECTIVE: The Epilepsy Genetics Initiative (EGI) was formed in 2014 to create a centrally managed database of clinically generated exome sequence data. EGI performs systematic research-based reanalysis to identify new molecular diagnoses that were not possible at the time of initial sequencing and to aid in novel gene discovery. Herein researchers report on the efficacy of this approach 3 years after inception.

METHODS: One hundred sixty-six individuals with epilepsy who underwent diagnostic whole exome sequencing (WES) were enrolled, including 139 who had not received a genetic diagnosis. Sequence data were transferred to the EGI and periodically reevaluated on a research basis.

RESULTS: Eight new diagnoses were made as a result of updated annotations or the discovery of novel epilepsy genes after the initial diagnostic analysis was performed. In five additional cases, the team provided new evidence to support or contradict the likelihood of variant pathogenicity reported by the laboratory. One novel epilepsy gene was discovered through dual interrogation of research and clinically generated WES.

SIGNIFICANCE: EGI’s diagnosis rate of 5.8% represents a considerable increase in diagnostic yield and demonstrates the value of periodic reinterrogation of whole exome data. The initiative’s contributions to gene discovery underscore the importance of data sharing and the value of collaborative enterprises.

April 2019 CURE Update

This past month, CURE attended the Research RoundTable for Epilepsy to provide input on clinical trial design. The roundtable focused on trials aiming to help individuals with rare, genetic forms of epilepsy.

Importantly, government and pharmaceutical representatives listened to patient representatives and clinicians, who gave their thoughts on clinical trial design. The hope of all attending was to optimize clinical trial design for maximum impact, efficiency, and validity, while addressing patient and caregiver needs.

Hearing feedback on the epilepsy research process from those directly affected is critical for getting vital treatments and therapies to those who need them most. These discussions are invaluable within the epilepsy community.

In addition to sharing information about this exciting discussion, this update highlights news and opportunities to engage with CURE, our partners, and the epilepsy community:

April 25: Webinar and Live Q&A on Transitioning from Pediatric to Adult Epilepsy Care

If your child has epilepsy, the transition of their care from a pediatric to adult neurologist is a critical time. In this month’s free webinar and live Q&A, discover how parents, patients, and doctors can plan the transition. Also, learn the established research guidelines which inform the transition care process. Register now to join us on Thursday, April 25 at 2:00PM CT.

The webinar is supported by the generosity of the BAND Foundation.

Learn More or Register Now

Survey: Help Improve Care for Children with Disruptive and Harmful Behaviors

Assist health care providers in better serving children with neurological conditions by participating in this survey of parents and caregivers developed by the Child Neurology Foundation (CNF). The survey closes on Wednesday, April 10.

The survey seeks feedback to better understand managing disruptive or harmful behavior in children with neurologic conditions, including epilepsy. The CNF will share anonymous information from this survey with health care providers, so they can better assist families.

Take the Survey

Time is Running Out: Apply for a CURE Scholarship by April 15!

CURE is helping scholars become agents of change for the epilepsy community with Education Enrichment Fund (EEF) scholarships of up to $5,000. The deadline to apply for these scholarships is Monday, April 15.

EEF scholarships support coursework aiming to advance personal knowledge in epilepsy research, health education, awareness, or advocacy. This one-time scholarship is awarded to those living with epilepsy or to family members and caregivers of those impacted by epilepsy.

EEF scholarships are made possible by the generous support of Lundbeck.

Learn More or Apply Now

Questions? Please reach out to us at scholarship@cureepilepsy.org.

Boston: Join us for a Day of Science and an Evening of Art

Two thought-provoking CURE events are heading to Boston! Join us on Friday, May 10 for the 1:26 The Art of Epilepsy reception and art exhibition. Then on Saturday, May 11, get your epilepsy questions answered by a panel of leading experts at the CURE Day of Science event.

1:26 The Art of Epilepsy
Get Tickets

1:26 The Art of Epilepsy is an evening of inspired artwork created by artists spanning the globe, linked by the common thread of epilepsy. Although every artists’ story is unique, the works become a collective force to combat the injustices, discrimination, and marginalization people with epilepsy face. 1:26 The Art of Epilepsy honors 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.

Day of Science
Register

On Saturday morning ask a panel of clinicians and epilepsy researchers your questions at CURE’s Day of Science. At this free event, panelists will field 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 physicians and researchers over a provided lunch.

Stay tuned: More Day of Science locations around the US will be announced soon!

These events are made possible thanks to the generous support of the BAND Foundation.

The Cotton Family: A Daughter’s Memory Inspires Epilepsy Research and Programming Funding

To honor the life of Vivian Cotton, who suffered from epilepsy and passed away at the young age of 18 months, Shery & David Cotton and Lisa & Michael Cotton have committed $2 million to benefit CURE and our initiatives to find a cure for epilepsy.

Vivian, Lisa and Michael’s daughter, was born prematurely, and as a result she suffered from epilepsy due to hydrocephaly. Vivian was a fighter from the very beginning, but despite all the treatments and medications available, her seizures were never controlled.

This significant gift will enhance a wide range of CURE activities and further energize development of innovative research and programming to one day lead to a cure for epilepsy. We’re so grateful to the Cottons for their legacy gift in memory of Vivian and are honored they believe in our mission to create a world without epilepsy through supporting research.

New Episodes: Seizing Life, a CURE Podcast

Catch up on the latest episodes of the CURE podcast Seizing Life! In March, we explored:

You can find Seizing Life on your favorite podcasting app or on our website, www.seizinglife.org.

Upcoming CURE Events

April 13: 5K Strides for Epilepsy Run/Walk – Salisbury, MD
April 25: Webinar: Transitioning from Pediatric to Adult Care – Online
May 10: 1:26 The Art of Epilepsy Reception and Art Exhibition – Boston, MA
May 11: Day of Science – Boston, MA

View All Upcoming Events

Citizens United for Research in Epilepsy (CURE) receives $2M gift from Shery and David Cotton and Lisa and Michael Cotton.

Chicago, IL (March 28, 2019) – Citizen’s United for Research in Epilepsy (CURE) is delighted to announce that Shery and David Cotton and Lisa and Michael Cotton have committed $2 million to benefit CURE and its initiatives to find a cure for epilepsy.

Since its inception in 1998, CURE has been at the forefront of the dramatic shift in the epilepsy research community from simply treating seizures to enhancing understanding of underlying mechanisms and causes, so that cures and preventative strategies can be found. CURE’s research program is cutting-edge, dynamic and responsive to new scientific opportunities and directions through both investigator-initiated grants and unprecedented scientific programs and initiatives.

Shery and David Cotton were the co-founders of Meridian Health Plan, a family owned company where Michael, their son, served as the COO. Shery, David, Lisa and Michael are active philanthropists and strong community supporters, especially in Detroit and their home town of Grosse Pointe, Michigan. The family has a very personal relationship with epilepsy and CURE. Four years ago, Lisa and Michael Cotton’s daughter, Vivian passed away at the young age of 18 months. Born prematurely, she suffered from epilepsy due to hydrocephaly. Vivian was a fighter from the very beginning, but despite all the treatments and medications available, her seizures continued. Since losing Vivian in 2015, Lisa and Michael have been actively contributing and fundraising for CURE, and Lisa was elected to the CURE board of directors in 2018. This significant gift will enhance a wide range of CURE activities and further energize development of innovative research and programming that will one day lead to a cure for epilepsy.

“We are immensely grateful to Shery, David, Lisa and Michael. Their family’s story touches so many in the epilepsy community,” said CURE founder Susan Axelrod. “Their compassion and generosity in the face of such devasting loss is truly inspiring and will help fuel discoveries in Vivian’s memory that will save others from suffering similar tragedies in the future.”

ABOUT CURE 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.

CURE Discovery: Using Patient-Specific Cardiac Cells to Predict SUDEP Risk

CURE-funded researchers are using a novel technique to discover ways to predict patients at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP). Dr. Lori Isom, her team, and co-investigator Dr. Jack Parent at the University of Michigan are transforming skin cells from patients with developmental and epileptic encephalopathy (DEE) syndromes into induced pluripotent stem cells (iPSCs). The team then generates cardiac cells from the iPSCs which retain the patients’ exact genetic information. These unique, patient-specific cardiac cells are used as models to understand if DEE-associated genes play a role in causing heart abnormalities which may lead to SUDEP. The team also hopes to develop measurable indicators, known as biomarkers, of SUDEP risk.

Severe DEE syndromes, such as Dravet syndrome, are associated with a high incidence of SUDEP. It is estimated that up to 20% of patients with Dravet syndrome die from SUDEP.1 There is still much to be understood about the mechanisms of SUDEP and how to predict who is at risk for it.

Dravet syndrome and other DEEs are often associated with variants in genes, such as SCN1A, SCN1B, and SCN8A. These genes provide instructions to make sodium ion channels, which are very important proteins that help brain cells transmit electrical signals. The same genes are also expressed in the heart; thus, the team hypothesizes that any variants in these genes that disrupt electrical signaling in the brain would affect normal electrical function of the heart as well. In support of this hypothesis, the investigators’ previous work in mouse models of Dravet syndrome and DEEs showed that these mice exhibited irregular heartbeat, which in some cases preceded SUDEP-like events.2-4

In this CURE-funded project, the investigators expanded upon their previous work by testing their hypothesis in heart muscle cells called cardiac myocytes, generated in the laboratory from skin cells of patients with Dravet syndrome or other DEEs using iPSC technology. This Nobel Prize-winning technology involves obtaining skin or blood cells from patients and converting them to iPSCs. These are stem cells that can be converted into almost any specialized cell type in the body, such as heart, muscle, pancreatic, or neuronal cells. The cells are patient-specific, meaning they retain the unique genetic make-up of the patient they originated from, allowing investigators to study cell types which would otherwise be very difficult or impossible to obtain from a living patient.

Dr. Isom, Dr. Parent, and their colleagues previously used iPSC technology to generate heart muscle cells from four patients with variants in the SCN1A gene and found increased sodium currents and spontaneous contraction rates in these cells, suggesting cardiac electrical dysfunction.5 Cardiac abnormalities were subsequently found in the patient with the highest increase in sodium current.5 These data suggest that iPSC-cardiac cells may be useful models for identifying and developing biomarkers, such as increased sodium current, as indicators of SUDEP risk.

The investigators used the same technique to study variants in the SCN1B and SCN8A genes. The team observed that iPSC-cardiac myocytes derived from a patient with SCN1B Dravet syndrome had increased sodium currents similar to those seen in iPSC-cardiac myocytes from the patient with SCN1A Dravet syndrome, suggesting that variants in these two different genes could cause heart abnormalities through similar mechanisms. Preliminary data in iPSC-cardiac myocytes from patients with DEE caused by variants in SCN8A, suggest that these cells have altered beating rates but no change in sodium current, which is aligned with their observations in a mouse model with a variant in SCN8A.

Taken together, these results reveal mechanisms by which different epilepsy-related genes can affect heart function and SUDEP. Future research will investigate the impact of variants of a specific non-ion channel gene to see if it causes altered cardiac beating. Patient-specific iPSC cardiac myocytes are a very useful model to study SUDEP mechanisms and could be developed as diagnostic biomarkers to identify SUDEP risk in patients.

1 Cooper MS et al. Mortality in Dravet Syndrome. Epilepsy Res. 2016 Dec; 128:43-47.
2 Auerbach DS et al. Altered Cardiac Electrophysiology and SUDEP in a Model of Dravet Syndrome. PLoS One. 2013;8(10).
3 Lopez-Santiago LF et al. Sodium channel Scn1b null mice exhibit prolonged QT and RR intervals. J Mol Cell Cardiol. 2007;43(5):636-47.
4 Frasier CR et al. Cardiac arrhythmia in a mouse model of SCN8A Epileptic Encephalopathy. Proc Natl Acad Sci U S A. 2016; in press.
5 Frasier CR et al. Channelopathy as a SUDEP Biomarker in Dravet Syndrome Patient Derived Cardiac Myocytes. Stem Cell Reports. 2018 Sep 11;11(3):626-634.

CURE Update: Webinars, Scholarships, and Epilepsy Community Events

Our Leaders in Epilepsy Research Webinar Series is back! You can discover research on family planning and epilepsy, in addition to learning strategies for minimizing risk to women and infants during pregnancy in our latest webinar: Epilepsy, Pregnancy, and Contraception.

Interested in other topics, such as promising anti-epilepsy drugs and epilepsy’s impact on memory and cognition? You can find a playlist of all past CURE webinars on YouTube.

Below, read about our upcoming webinar on Transitioning from Pediatric to Adult Epilepsy Care. Also, in this update:

Webinar: Transitioning from Pediatric to Adult Epilepsy Care

It is critical for patients, parents, and neurologists to have a plan while transitioning from pediatric to adult epilepsy care. During a free webinar and live Q&A on Thursday, April 25 at 2:00PM CT, learn about research-based guidelines for developing a transition care plan, as well as what factors to consider during the transition.

Bring your questions for the live Q&A! You can ask the presenter, Dr. Joseph Sirven, questions such as:

  • Is the transition of care plan dependent upon a patient’s epilepsy type?
  • Do treatment options change when a patient begins seeing an adult neurologist?
  • What research has been done into the effects of transition care on a patient’s lifestyle?

This webinar is supported by the generosity of the BAND Foundation.

Learn More or Register Now

CURE Scholarship Application Deadline: April 15

The application deadline for the 2019 Education Enrichment Fund (EEF) scholarships is April 15. These scholarships cover up to $5,000 of each recipient’s tuition, books, and any other course-required materials.

Made possible by generous support from Lundbeck, this one-time scholarship is awarded to those living with epilepsy or to family members and caregivers of those impacted by epilepsy. The scholarship supports coursework aiming to advance personal knowledge in epilepsy research, health education, awareness, or advocacy.

Learn More or Apply Now

Questions? Please reach out to us at scholarship@curepilepsy.org.

New from Seizing Life, a CURE Podcast

Catch up on the latest episodes of the CURE podcast Seizing Life! Last month, we explored:

  • The memoir A Mind Unraveled with author Kurt Eichenwald: Watch or Listen
  • How epilepsy research has changed over 20 years with CURE Founder Susan Axelrod: Watch or Listen
  • The ways Individualized Education Programs (IEPs) can help students with epilepsy with moms, Stacy Pigott and Shalee Cunneen: Watch or Listen Now
  • Genetics and how epilepsy genetic testing can help patients with Dr. John Millichap: Watch or Listen

You can find Seizing Life on your favorite podcasting app or on our website, www.seizinglife.org.

Join Us at Day of Science Events in Houston and Boston

Day of Science in PhiladelphiaAt the CURE Day of Science events in Houston and Boston, leading experts answer your questions about epilepsy and share the latest news in epilepsy research.

This free event is happening in Houston on Saturday, March 30 and in Boston on Saturday, May 11.

During Day of Science, a panel of epilepsy experts address audience questions and participate in small-group discussions over a provided lunch with the attendees.

Join us for answers to questions, such as:

  • What targeted treatments have been developed due to the discovery of new epilepsy genes?
  • What are the risks associated with epilepsy surgery?
  • What epilepsy drugs are currently in development and what types of epilepsy can they be prescribed to treat?

Houston: Learn More
Boston: Learn More

Stay tuned: More Day of Science locations around the US will be announced soon!

These events are made possible thanks to the generous support of the BAND Foundation and Sunovion.

CURE Champion Spotlight: Lauren Nathan Raises Funds for a “Real-Life Princess” with Epilepsy

CURE Champion Lauren Nathan raised $2,600 after being inspired by little Adelaide Cervantes, who was diagnosed with Infantile Spasms at just 7 months of age. Lauren and her husband, Jeff, are good friends of Adelaide’s parents, Kelly and Miguel Cervantes. Seeing her friends battle epilepsy moved her to act.

To honor Adelaide, who Lauren calls a real-life princess, she signed up for the Disney Fairytale Challenge, determined to raise vital funds to support CURE. The 2-day challenge involves completing the Enchanted 10K followed by the Princess Half-Marathon, totaling 19.3 miles.

When training got tough, Lauren remembered the daily challenges Adelaide and the Cervantes family face. “To be inspired is really amazing. It can push you further and harder than you will ever even know,” said Lauren.

On February 22 and 23, she conquered both races in the intense Florida heat, raising epilepsy awareness and funds in honor of little princess Adelaide.

Feeling inspired to fundraise in honor of someone in your life? Learn how to become a CURE Champion.

Next CURE Events

March 8-14: Blo Wicker Park Grand Opening – Chicago, IL
March 30: Day of Science in Houston – Houston, TX
March 31: Million Dollar Quartet – Munster, IN
April 14: 5k Strides for Epilepsy Run/Walk – Salisbury, MD
April 25: Webinar: Transitioning from Pediatric to Adult Care, Online
May 11: Day of Science in Boston – Boston, MA

View All Upcoming Events

Married with Children...with Epilepsy

CURE Update: International Epilepsy Day, Seizing Life Podcast, and Day of Science in Houston

Join a global movement to promote epilepsy awareness for International Epilepsy Day on February 11! More than 120 countries participate, working to highlight the problems faced by those with epilepsy, their families, and caregivers. Read on to learn how you can support epilepsy research while spreading the word about how prolific epilepsy is.

Also in this update, learn about the Seizing Life podcast episodes which recently launched and get the details about the upcoming Day of Science event in Houston.

Best regards,

Laura S. Lubbers, PhD

Listen to the Seizing Life Podcast Now!

Seizing Life is available now! Watch or listen to full episodes on podcast platforms, including Apple Podcasts and Google Podcasts, or on seizinglife.org.

Check out out first three episodes:

Plus this month, look forward to an interview with CURE founder Susan Axelrod.

Never miss an episode! Subscribe to receive updates every time an episode airs.

Watch or Listen Now

Get Involved Online and In-Person for International Epilepsy Day

Join the CURE community in raising funds for research and spreading epilepsy awareness on International Epilepsy Day.

Set Up a Facebook Fundraiser: Ask your Facebook friends help you fund research to find a cure for epilepsy. Share why raising funds for epilepsy research is so critical and encourage people to donate! Click here for a detailed guide or set up your fundraiser now.

Spread Awareness on Social Media: Show your friends, family, and followers how widespread epilepsy is, as well as how vital better treatment options are to so many people around the world. Download and share stunning epilepsy statistics to your social media pages.

Visit Select Chicago Häagen-Dazs Shops: Attend Ice Cream for a CURE at Häagen-Dazs shops in Harlem Irving Plaza or Lincolnwood Town Center. When you donate to CURE, you’ll receive 10% off one item. Also, a portion of the day’s sales from each location will benefit CURE.

Houston: CURE Day of Science is Coming Your Way!

At the CURE Day of Science event in Houston, leading experts answer your questions about epilepsy. This free event on Saturday, March 30 gives those impacted by epilepsy and their families the chance to learn from researchers and physicians in an encouraging environment.

During Day of Science, a panel of epilepsy experts address audience questions and participate in small-group discussions over lunch with the attendees.

Join us for answers to questions, such as:

  • What targeted treatments have been developed due to the discovery of new epilepsy genes?
  • What factors must be considered when moving my child from pediatric to adult care?
  • What are the risks associated with epilepsy surgery?
  • What epilepsy drugs are currently in development and what types of epilepsy can they be prescribed to treat?

This event is made possible thanks to the generous support of the BAND Foundation and Sunovion.

Learn More or Register Now

Stay tuned: more Day of Science locations around the US will be announced soon!

Upcoming CURE Events

February 10: Ice Cream for a CURE – Chicago, IL
February 16: 24-Hour Livestream for a CURE – Online
February 16: Race for Epilepsy – Washington, NC
February 20: Quiz for a Cause Trivia Night – Chicago, IL
March 30: Day of Science – Houston, TX

Citizens United for Research in Epilepsy (CURE) Launches Podcast, Seizing Life

Finding a carefree moment as a parent to a six-year-old and a three-year-old child can feel like a challenge. When your child is diagnosed with epilepsy, those crucial, carefree moments in a marriage come with additional stress and worry.

On the new CURE podcast, Seizing Life, this is one of the topics host Kelly Cervantes discusses with her husband, HAMILTON Chicago star Miguel Cervantes; the rare carefree moments, obstacles and triumphs in their marriage while supporting their daughter who has epilepsy.

Kelly and Miguel Cervantes’ daughter Adelaide had her first seizure when she was just 7-months old. Now fierce advocates for finding a cure, the Cervantes have learned how to adjust to life with Adelaide’s condition while discovering their partner’s strengths and weaknesses along the way.

“Parents are in such a different mental place when it’s not about just regular life things and it becomes about the health and livelihood of your child,” says Miguel Cervantes in an inaugural episode. “Even in our carefree moments, in the back of our minds, we have this baby who is clearly sick and that doesn’t go away.”

Kelly Cervantes, CURE board member will host the weekly podcast, delivering interviews with her husband, best-selling author Kurt Eichenwald, patients, parents, medical professionals and others in the epilepsy community bringing the critical need for epilepsy research to the forefront while teaching empathy and inspiring hope.

“We believe it is vital to share the impact epilepsy has on families,” says Kelly Cervantes, “and to share resources and insights from clinicians, researchers and advocates as we seek a cure for epilepsy.”
You can find the first three episodes of the Seizing Life podcast at www.SeizingLife.org:

For additional episodes of Seizing Life, subscribe here. You can watch the weekly episodes on video at the Seizing Life YouTube channel.

You can also find Seizing Life on Facebook, Twitter, and Instagram.

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ABOUT CURE

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 nongovernmental 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.

ABOUT SEIZING LIFE

Seizing Life, a weekly CURE podcast hosted by CURE Board Member Kelly Cervantes, brings you inspirational and helpful stories from those impacted by epilepsy. Kelly interviews patients,
advocates, caregivers, and medical professionals to bring the critical need for epilepsy research to the forefront, while teaching empathy and inspiring hope.

For more information about Seizing Life, please visit our website at www.SeizingLife.org.

CURE Discovery: Predicting Acquired Epilepsy Following a Brain Infection

A potential method of predicting who will get epilepsy following a brain infection, such as that brought on by malaria, has been discovered. This breakthrough is the result of work by two CURE grantees, Dr. Bruce Gluckman and Dr. Steven Schiff of Pennsylvania State University.

Individuals who contract cerebral malaria (malaria accompanied by a coma, typically spread by mosquitos) are at a substantially increased risk of developing epilepsy.1 Malaria is especially widespread in non-industrialized areas of the world and often affects children.2 Because malaria is so widespread, it may be the most significant cause of post-infection epilepsy in the world today. Currently, there are no methods to predict who will develop epilepsy, or any means of preventing epilepsy after such an infection.

This makes Dr. Gluckman and Dr. Schiff’s discovery so critical. Together with their team members Fatemeh Bahari and Dr. Paddy Sstentongo, they found a combination of brain and heart activity in mice that could accurately predict which animals would develop seizures and epilepsy after infection with malaria.3

Using their CURE grant, Drs. Gluckman and Schiff studied the connection between cerebral malaria and epilepsy by first developing a mouse “model” replicating malaria-induced epilepsy. In addition, they investigated possible ways to determine which mice would go on to develop epilepsy after infection.

Using the mice which developed epilepsy after infection with malaria, the research team measured two important variables often associated with epilepsy: the activity of the brain and heart. They found abnormal brain activity immediately followed by abnormal heart activity – but only in the animals which went on to develop epilepsy.

This discovery represents a possible biomarker for predicting epilepsy following infection with malaria. In other words, these may be measurable indicators to determine the infected individuals who will develop epilepsy. Furthermore, the abnormal brain and heart activity was detectable as early as 14 weeks before the first seizure, opening a potential window during which therapeutic interventions might be used to prevent epilepsy.

Drs. Gluckman and Schiff plan to continue this work, using these findings to develop treatment methods for people who contract cerebral malaria to prevent them from developing epilepsy. They are hopeful their discovery will lead to a means to eliminate not only post-malarial epilepsy, but also epilepsy caused by other types of brain injuries.

1 Ngoungou and Preux. Cerebral malaria and epilepsy. Epilepsia 2008; 49(s6):19-24.
2 World Health Organization. World malaria report 2017. http://www.who.int/malaria/publications/world-malaria-report-2017/report/en/.
3 Bahari et al. A brain-heart biomarker for epileptogenesis. J Neurosci 2018; pii: 1130-18.