Susan And David Axelrod Join Leaders In Innovation Dinner

Frustrated with the inability to protect her child from the devastation of uncontrollable seizures and the side effects of medications, Susan Axelrod joined forces with two other concerned parents to spearhead the search for a cure for epilepsy. Axelrod became the Founding Chair of Citizens United for Research in Epilepsy (CURE), and along with her husband David Axelrod has raised more than $43 million to fund research grants around the world.

On Nov. 19, Susan and David Axelrod will join scientists, researchers and community members for the 2018 Leaders in Innovation Dinner hosted by Robarts Research Institute. This year’s dinner celebrates research excellence in the field of epilepsy.

Hari Ravichandran Launches Foundation With Inaugural Gift To Citizens United for Research in Epilepsy (CURE)

$150,000 Commitment in Support of 20th Annual Benefit and ‘Taking Flight’ Research Award

BOSTON, MA (August 16, 2018) – Hari Ravichandran, the CEO and Founder of Jump Ventures, a scalability infusion firm, today launched the Ravichandran Foundation by announcing its first financial commitment of $150,000 to benefit Citizens United for Research in Epilepsy (CURE) and their initiatives to find a cure for epilepsy.

For 20 years, 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.

“The Ravichandran Foundation is dedicated to ensuring we make meaningful contributions that enable the communities where we live and work to thrive by improving health, promoting education and empowering youth locally and globally,” said Hari Ravichandran. “Our goal is to make contributions that also leave a legacy of positive social impact. I can’t think of a better way to do that, than by supporting the efforts of young researchers and their mission to find a cure for epilepsy.”

The Ravichandran gift will directly support CURE’s ‘Taking Flight’ research award which facilitates a promising epilepsy research project and promotes the career of a young epilepsy investigator, allowing them to develop a research focus independent of their mentor(s).

“As CURE prepares to recognize the advancements made by epilepsy researchers over the past 20 years, I’m reminded that many of them were initially recipients of a CURE Taking Flight Award. So, I’m very grateful to Hari for his generosity and foresight in funding a next generation researcher whose research could be groundbreaking. Funding young researchers inspires them to devote their careers to studying epilepsy and is crucial to our pipeline of emerging discoveries,” said CURE founder Susan Axelrod.

This contribution will also sponsor CURE’s 20th Annual Benefit, which will be held in Chicago on October 15, 2018 at Navy Pier.  The CURE Benefit will showcase the organization’s 20 years of impact and emerging discoveries.

ABOUT THE RAVICHANDRAN FAMILY FOUNDATION
Based in Boston, Massachusetts, the Ravichandran Foundation is a philanthropic organization founded by Hari Ravichandran, a technology entrepreneur and the CEO and Founder of Jump Ventures, a scalability infusion firm. The foundation is committed to improving health, promoting education and empowering youth locally and globally. For more information visit: www.ravichandranfoundation.org.

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 $50 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.

# # #

MEDIA CONTACTS:
Lark-Marie Anton
Ravichandran Foundation  
(781) 552-3259
lark.anton@ravichandranfoundation.org

Michael Organ
CURE
(312) 255-1801
michael.organ@cureepilepsy.org

CURE Update: Opportunities to Learn More About Epilepsy

CURE has expanded opportunities for you to learn about epilepsy and the latest epilepsy research.

In September, the next stop for CURE’s Day of Science is Los Angeles, giving those impacted by epilepsy and their families the chance to get their questions answered by local physicians in an encouraging environment. You can read more about Day of Science events in this update.

In addition, our free online webinar series continues to explore research and clinical insights, with this month’s webinar focusing on Anxiety and Depression Associated with Epilepsy. The webinar discusses how these conditions impact the daily lives of people with epilepsy, including how anxiety and depression can negatively affect their current medications. The presentation also offers strategies for better coping with stress.

Also in this update…

  • CURE Champion Spotlight: Dr. Julie Thompson-Dobkin Brings Artists Together to Fight Stigma and Raise Funds for Research
  • Support Epilepsy Research Every Month by Becoming a Monthly Donor
  • Save the Date: 20th Annual Chicago Benefit on October 15, 2018
  • Next CURE Events

I hope you’re having a great summer,
Laura S. Lubbers, PhD

Free Webinar on Anxiety and Depression Associated with Epilepsy 

If you or a loved one struggle with epilepsy as well as a mood disorder, we invite you to join an online, educational webinar about Anxiety and Depression Associated with Epilepsy on Tuesday, August 14 at 12:00PM CT.

Dr. Andres M. Kanner, a leading expert on epilepsy and psychiatric disorders, discusses how anxiety and depression in people with epilepsy negatively impacts quality of life, reduces tolerance of antiepileptic medications, and increases the risk of suicidal ideation and behavior. The presentation also reviews how stress affects epileptic seizures and offers strategies patients can use to better cope with stress.

During a live Q&A session with Dr. Kanner, you can ask questions, such as:

  • What methods can I use to lower stress and anxiety that could potentially trigger seizures?
  • How do I know if my depression is linked to my epilepsy or my medications?
  • Are anxiety and depression symptoms dependent upon seizure-type? Age of epilepsy onset?

Learn More and Sign Up Now

Register Now for Day of Science in Los Angeles! 

Day of Science

Join us for Day of Science in Los Angeles at University of California Los Angeles on September 29Registration is now open for this free, educational event.

At Day of Science, a panel of local physicians address the audience’s questions and participate in small group discussions with attendees.

When you join us at Day of Science, you can ask questions, such as:

  • What are some of the breakthroughs in epilepsy therapies we can expect to see soon?
  • How do I know if genetic testing is right for my child, and if it is, what type of test should be ordered?
  • If we can locate the source of my child’s seizures, how is a treatment plan then developed?

Stay tuned – registration for Day of Science in Raleigh-Durham and Miami will be opening soon.

Register for Day of Science in Los Angeles

CURE Champion Spotlight: Dr. Julie Thompson-Dobkin Brings Artists Together to Fight Stigma and Raise Funds for Research 

Dr. Julie Thompson-Dobkin

For Julie Thompson-Dobkin, DO, the statistic 1:26 people will develop epilepsy in their lifetime rings true. In addition to being a board-certified neurologist at Share Our Selves Medical Clinic, which provides neurology care for the indigent and uninsured populations of Orange County, California, Dr. Thompson-Dobkin is also the mother of a child with epilepsy.

As a CURE Champion, Dr. Thompson-Dobkin hosts 1:26 The Art of Epilepsy, an art show that provides a platform for the diverse epilepsy community to have their voices heard and their stories told. In 2017, as Dr. Thompson-Dobkin prepared to host the sixth annual event, she decided to name CURE as the beneficiary.

“After doing much research into the various epilepsy programs in the US,” Dr. Thompson-Dobkin says, “I was impressed by CURE’s international support of innovative, cutting-edge research to address all aspects of epilepsy from understanding the mechanisms of epilepsy, to eliminating side effects from antiepileptics, to addressing post-traumatic epilepsy and SUDEP. With over 88% of funding going to support their programs and the amazing team of folks I was introduced to, it became an easy decision. CURE’s work and the enthusiastic team I have had the opportunity to collaborate with has been amazing and an inspiration to go national in 2018.”

This year, Dr. Thompson-Dobkin is hosting the Seventh Annual 1:26 The Art of Epilepsy in IrvineChicago, and San Francisco, as well as Boston in spring 2019. In addition to hosting this event, Dr. Thompson-Dobkin has recently been working with students confronted by discrimination in their schools and communities due to race, gender identity, or socio-economic status. Art has become a platform to raise awareness of these socially challenging situations and foster understanding and acceptance.

Become a CURE Champion

Support Epilepsy Research Every Month by Becoming a Monthly Donor 

Epilepsy doesn’t stop and neither do we! Help bring us closer to finding a cure by becoming a monthly donor. Monthly donations build-up over time, which means any recurring donation can make a big impact.

Becoming a monthly donor is a convenient, flexible way to help ensure cutting-edge epilepsy research is consistently funded. An amount of your choosing will be automatically charged to your credit card or debited from your bank account each month.

You can set up your monthly donation through our website today by checking the “Make this a monthly gift” box when you donate. You can also become a monthly donor by getting in touch with CURE’s Development Associate Kate Murphy at (312) 255-1801.

Become a Monthly Donor Today!

Save the Date: 20th Annual Chicago Benefit on October 15, 2018  

We are celebrating 20 years of CURE’s impact and emerging discoveries at the 20th Annual Chicago Benefit on October 15, 2018 at Navy Pier.

This event will feature a reception, dinner, and musical performances by Rock & Roll Hall-of-Famers Eddie Vedder and Nils Lofgren, as well as the star of Chicago’s production of HAMILTON Miguel Cervantes.

Interested in sponsorship and underwriting opportunities? Please contact Mia Beans at Mia.Beans@CUREepilepsy.org or (312) 255-1801.

Learn More

Next CURE Events 

Webinar: Anxiety and Depression Associated with Epilepsy – August 14

Day of Science in Los Angeles – September 29

The Hidden Truths Project’s 7th Annual 1:26 The Art of Epilepsy in Irvine – September 29

The Hidden Truths Project’s 7th Annual 1:26 The Art of Epilepsy in Chicago – October 14

20th Annual Chicago Benefit – October 15

CURE Discovery: Transplanting Inhibitory Neurons Can Reduce Seizures

CURE Grantee Dr. Janice Naegele of Wesleyan University has been working on harnessing the brain’s own inhibitory power as a treatment to reduce excitability and “quiet” the overly excitable epileptic brain. As a promising first step, she and her team have successfully shown that transplantation of mouse inhibitory neurons into the mouse hippocampus – a brain structure that is often involved in epilepsy – can reduce the number of seizures in mice with temporal lobe epilepsy. (1)

Temporal lobe epilepsy is the most common form of epilepsy, with neuronal loss being one of its hallmark traits. (2,3) The loss of inhibitory neurons can be an important factor in the development or worsening of the disorder, (4) because the balance between excitatory and inhibitory neuronal activity is essential for proper brain function. Fewer inhibitory neurons can decrease inhibitory neurotransmission, in turn leading to excessive neuronal excitation, seizures, and epilepsy. One focus of Dr. Naegele’s epilepsy research has been to find a way to increase inhibition in the hyperexcitable epileptic brain. (5)

Dr. Naegele used her CURE grant to focus on transplanting both mouse and human inhibitory neurons into the hippocampus of mice with temporal lobe epilepsy. She hypothesized that these inhibitory neurons would wire up with existing neurons, increasing inhibitory transmission and decreasing the hyperexcitability that characterizes temporal lobe epilepsy. This type of treatment is called “regenerative medicine” because it uses healthy tissue to restore normal brain functioning. An advantage of regenerative medicine is that the transplanted cells can potentially replace lost or damaged inhibitory neurons and also integrate into the existing brain circuitry. This treatment would provide a cure for seizures by addressing the root cause, unlike standard antiepileptic drugs that simply treat the symptoms of seizures.

Indeed, as shown by advanced imaging techniques, the inhibitory neurons Dr. Naegele’s team transplanted into the brains of mice with temporal lobe epilepsy formed new, functional connections with excitatory neurons already present in the hippocampus, providing the increased inhibition that likely led to fewer seizures in these mice. (1)

Following the success of quieting seizures using the implantation of mouse inhibitory neurons, Dr. Naegele and her team are now focused on a means to quiet seizures by implanting human inhibitory neurons, pushing this research one step closer to being a viable treatment for people with epilepsy. As part of their strategy, they are keeping in mind important potential differences in neuronal generation and transmission between humans and mice. (6)

Dr. Naegele’s research brings an exciting possibility to the future of epilepsy treatment: the transplantation of a type of neuron that already exists in the human brain with the goal of stopping seizures. While work still remains, CURE applauds the progress Dr. Naegele has made thus far. We share Dr. Naegele’s hopes that her approach becomes a non-drug method of treating those affected by not only temporal lobe epilepsy, but other forms of epilepsy as well.

1 Henderson et al. Long-term seizure suppression and optogenetic analysis of synaptic connectivity in epileptic mice with hippocampal grafts of GABAergic interneurons. J Neurosci 2014; 34(40):13492-13504.
2 Pitkänen A, Sutula TP. Is epilepsy a progressive disorder? Prospects for new therapeutic approaches in temporal-lobe epilepsy. Neurol 2002; 1(3):173-181.
3 Engel J Jr, Williamson PD, Weiser HG. Mesial temporal lobe epilepsy. In: Epilepsy: a comprehensive textbook (Engel J Jr, Pedley TA, eds) 1997: 2417-2426.
4 Kumar SS, Buckmaster PS. Hyperexcitability, interneurons, and loss of GABAergic synapses in entorhinal cortex in a model of temporal lobe epilepsy. J Neurosci 2006; 26(17):4613-4623.
5 Van Zandt MA, Naegele JR. GABAergic synapse dysfunction and repair in temporal lobe epilepsy. (2017) Synaptic Plasticity Thomas Heinbockel, IntechOpen; DOI: 10.5772/67218. Available from: https://www.intechopen.com/books/synaptic-plasticity/gabaergic-synapse-d….
6 Naegele JR. Controversial brain study has scientists rethinking neuron research. (2018) Available from: https://theconversation.com/controversial-brain-study-has-scientists-ret…

Students Impacted by Epilepsy Use Scholarships to Become Agents of Change Across the US

Citizens United for Research in Epilepsy (CURE) and Lundbeck have announced the newest cohort of Education Enrichment Fund (EEF) Scholars for 2018. These 10 new scholars have all been personally impacted by epilepsy and, collectively, will 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 a one-time scholarship (up to $5,000) to those living with epilepsy, or for family members and caregivers of those impacted by the disease. The scholarship, which is in its third year, covers tuition, books, and academic materials and supports coursework advancing personal knowledge in research, health education and advocacy in relation to epilepsy.

“As a patient-centered and research driven organization, CURE greatly appreciates Lundbeck’s generous support of the Education Enrichment Fund Scholars Program,” said Stacey Pigott, Chair of CURE’s Research Committee. “This year’s recipients are all incredibly deserving with their personal connection to epilepsy and shared goal of furthering their education to enact positive change within the broader epilepsy community.”

One scholar, after serving as a nurse for seven years in the U.S. Army, was diagnosed with epilepsy caused by a brain tumor. Her personal battle towards recovery has led her to pursue a career as a Psychiatric Mental Health Nurse Practitioner.

Another scholar has spent ten years battling for her son who was diagnosed with epilepsy at the age of four. Her triumphs and tragedies have motivated her to pursue a career as a Family Nurse Practitioner so she can advocate for others who are battling this disorder.

Other awardees include an aspiring pediatric neurologist seeking to combat the effects of epilepsy he has witnessed in his older brother; a student living with epilepsy himself and striving to become a neurologist; and a teacher in the peace corps seeking to advance epilepsy research to treat not only her own disorder, but the disorder of the students in her classroom.

“This is the third round of Education Enrichment Fund Scholars and, once again, I am amazed at the recipients’ passion, hopefulness and determination to make a difference in the lives of others who are living with epilepsy,” said Lorena Di Carlo, Vice President & General Manager, Neurology, at Lundbeck. “This initiative has taught us so much about the strength of the epilepsy community, and we are proud to be a part of it.”

Launched in 2016 with just three scholars, the EEF Scholarship program has more than tripled in 2018 and has supported nearly 20 scholars since the program’s inception.
2018 winners include:

 

Click to learn more about each scholar.

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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 $50 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 Lundbeck

H. Lundbeck A/S (LUN.CO, LUN DC, HLUYY) is a global pharmaceutical company specialized in psychiatric and neurological disorders. For more than 70 years, we have been at the forefront of research within neuroscience. Our key areas of focus are depression, schizophrenia, Parkinson’s disease and Alzheimer’s disease.
An estimated 700 million people worldwide are living with psychiatric and neurological disorders and far too many suffer due to inadequate treatment, discrimination, a reduced number of working days, early retirement and other unnecessary consequences. Every day, we strive for improved treatment and a better life for people living with psychiatric and neurological disorders — we call this Progress in Mind.

Read more at www.lundbeck.com/global/about-us/progress-in-mind.

Our approximately 5,000 employees in more than 50 countries are engaged in the entire value chain throughout research, development, production, marketing and sales. Our pipeline consists of several late-stage development programs and our products are available in more than 100 countries. Our research center is based in Denmark and our production facilities are located in Denmark, France and Italy. Lundbeck generated revenue of DKK 17.2 billion in 2017 (EUR 2.3 billion; USD 2.6 billion).

In the U.S., Lundbeck employs nearly 1,000 people focused solely on accelerating therapies for brain disorders. With a special commitment to the lives of patients, families and caregivers, Lundbeck U.S. actively engages in hundreds of initiatives each year that support our patient communities. For additional information, we encourage you to visit our corporate site at www.lundbeck.com/us and connect with us on Twitter at @LundbeckUS.

July CURE Update: Epilepsy Advocacy, Events, and Webinar

CURE has been active on Capitol Hill advocating for epilepsy research and I recently participated in several media interviews about the FDA approval of a new epilepsy drug. But in this month’s update, I’ll primarily focus on how you can advance epilepsy research by becoming a CURE Champion.

When you host a CURE Champion event, you bring your community together to increase awareness about epilepsy and the critical need for a cure. Whether a dance class, art exhibition, 5K run, or meet-up, your CURE Champion event can make a real difference in the quest for a cure.

Our CURE Champions are parents like the Cunneens, friends of families dealing with epilepsy like Arielle Singer, inspiring children like Belle Leal, and committed professionals like Dr. Julie Thompson-Dobkin. This month, take a moment to learn more about our CURE Champions and consider becoming one.

CURE Champion Spotlight: How the Cunneen Family Raised Over $100,000 for Epilepsy Research 

The Cunneen Family

Blake and Shalee Cunneen, along with their children Ella and Sean, have been CURE Champions for three years. The Cunneens host Ella’s Race in La Grange, IL, which has raised nearly $100,000 and brought over 500 people together to support CURE and help combat epilepsy.

Blake and Shalee became CURE Champions for their daughter, Ella, who was first diagnosed with epilepsy just days after her first birthday. Ella is 8 years old now and has endured countless prolonged hospital stays and the side effects of 18 different medications. Unfortunately, Ella continues to have seizures.

Due to her frequent seizures, Ella’s development has been significantly slowed, but her indelible spirit remains untouched. She continues to attack each new challenge she faces with a smile.

“Finding a new and novel treatment and changing technology is currently our only hope for Ella to become seizure-free. CURE is constantly at the forefront of the epilepsy research community, and they are also very fiscally responsible with all the contributions they receive. We are proud to be volunteers for CURE, and Blake is also a Board Member for the organization. We are very passionate about this cause and believe CURE is the best agency out there to help us and Ella.” – Shalee Cunneen

Learn More About Ella and Become a CURE Champion

Next Week: Free Webinar on Epilepsy, Memory, and Aging 

Join us for a free webinar discussing Epilepsy’s Impact on Memory and Cognition Over Time on Monday, July 9, at 1:00PM CT. During this webinar, you’ll learn about therapies that can help prevent memory loss and cognitive decline in people with chronic epilepsy, as well as what factors contribute to healthy cognitive and brain aging.

The webinar will be presented by Dr. Bruce Hermann, an expert in brain and cognitive aging. During a Q&A session with Dr. Hermann, you can ask questions such as:

  • Can any measures be taken to combat the cognitive decline that accompanies getting older with epilepsy?
  • Why is memory loss and cognitive decline associated with epilepsy?
  • Are certain individuals with epilepsy more likely to experience cognitive decline as they age than others?

Learn More and Register Now

Epilepsy Advocacy on Capitol Hill 

Epilepsy Advocacy on Capitol Hill

CURE headed to Capitol Hill to advocate for federal research funding for Sudden Unexpected Death in Epilepsy (SUDEP). The risk of sudden death is over 20 times higher for people with epilepsy than for the general population, and understanding SUDEP’s causes and mechanisms is critical to preventing it.

Our Associate Director of Research, Dr. Lauren Harte-Hargrove, visited congressional offices with representatives from the Danny Did Foundation and the Dup15q Alliance. They went to the offices of Illinois Senator Dick Durbin and Representatives Mike Quigley, Brad Schneider, Jan Schakowsky, and Bill Foster.

Federal funding for SUDEP research programs is imperative for preventing SUDEP. Advocacy from organizations like CURE and from the epilepsy community plays a pivotal role in the fight for funding.

Save the Date: 20th Annual Chicago Benefit on October 15, 2018 

We are celebrating 20 years of CURE’s impact and emerging discoveries at the 20th Annual Chicago Benefit on October 15, 2018 at Navy Pier. This event will feature a reception, dinner, and music performance from a very special guest. Stay tuned to find out who the surprise performer is!

Interested in sponsorship and underwriting opportunities? Please contact Mia Beans at Mia.Beans@CUREepilepsy.org or 312-626-1798.

Learn More

Start a Facebook Fundraiser to Support Epilepsy Research 

Looking for a great way to get your friends involved in helping to find a cure for epilepsy? Host a CURE fundraiser on Facebook!

You and your Facebook friends can make an impact by helping CURE fund cutting-edge epilepsy research. More than 800 people have donated to CURE through Facebook fundraisers this year, and you can join them today!

Facebook covers all credit card processing fees, so 100% of your friends’ donations come to CURE.

Start Your Fundraiser and Like Us on Facebook

Next CURE Events 

Webinar: Epilepsy’s Impact on Memory and Cognition Over Time – July 9

Pies and Pints to Benefit CURE, hosted by Kelly and Miguel Cervantes – July 29

The Hidden Truth Project’s 7th Annual 1:26 The Art of Epilepsy in Irvine – September 29

The Hidden Truth Project’s 7th Annual 1:26 The Art of Epilepsy in Chicago – October 14

CURE Discovery: New Cause of Severe Childhood Epilepsy Found – Genetic Mutation in the CUX2 Gene

CURE Grantee Dr. Gemma Carvill has identified a new cause of epilepsy: a mutation in the gene CUX2. Dr. Carvill’s discovery was recently published in the Annals of Neurology.1

The discovery provides an important advance in our understanding of the causes of a class of severe childhood epilepsies. This class includes childhood epileptic encephalopathy, an aggressive and severe group of treatment-resistant epilepsy disorders in which children can have profound cognitive and neurological deficits.2,3

Dr. Carvill began her research into the ways specific genetic mutations lead to childhood epileptic encephalopathy in 2015 as the result of a 1-year CURE Taking Flight Award. This award program encourages young investigators to conduct independent research which could lead to a cure for epilepsy. When Dr. Carvill recieved the CURE Taking Flight Award, she was a Postdoctoral Fellow at the University of Washington.

Dr. Carvill studied the ways genetic mutations lead to epilepsy. Her initial findings suggested that mutations in a class of genes important in determining the structure of DNA could impact several genes involved in epilepsy, making this class of genes a potential target of future epilepsy therapy development.

Since receiving her CURE award, Dr. Carvill’s career has certainly “taken flight” – she is now Assistant Professor of Neurology and Pharmacology at Northwestern University. Still, Dr. Carvill has remained committed to her quest to understand the genetic mechanisms behind severe childhood epilepsy. In her latest study, Dr. Carvill partnered with Dr. Gaetan Lesca of the Lyon University Hospital, located in France, to identify de novo mutations in the gene CUX2 as a new cause of epilepsy. De novo mutations are changes present only in the affected patient and not in their healthy parents. CUX2 is important in binding DNA and promoting the expression of certain target genes. Mutations in CUX2 cause errors in this process that can lead to epilepsy.

Dr. Carvill’s report details her international study of 9 patients aged 6 months to 21 years who first began having seizures early in life. To identify the mutation in the CUX2 gene, Dr. Carvill and her team used, among other techniques, a test called whole exome sequencing. This test analyzes a person’s genes to identify changes in their DNA. All 9 patients had the same CUX2 mutation. The team found that the majority of these patients had severe treatment-resistant epilepsy that started early in life, severe intellectual disability, and did not have speech appropriate for their age.

Besides finding an important genetic cause of severe childhood epilepsy, which can now be targeted for the development of therapeutic interventions, Dr. Carvill’s collaboration with Dr. Lesca highlights the importance of international efforts to identify new genes important in epilepsy. As Dr. Carvill notes, these genetic mutations are very rare and therefore collaborative efforts with multiple patient populations make it more likely that a rare genetic mutation can be identified and studied.

In the future, Dr. Carvill plans to further explore the genetic mechanisms behind these devastating childhood epilepsies. Her goal, which we at CURE share, is that treatments and cures can be found for all of the amazing children affected by epilepsy and their wonderful families, too.

Citations

1 Chatron N et al. The epilepsy phenotypic spectrum associated with recurrent CUX2 variant. Ann Neurol2018; 6 [Epub ahead of print]
2 Cross H and Guerrini R. The epileptic encephalopathies. Handb Clin Neurol 2013; 111:619-626.
3 Jehi L, Wylie E, Devinsky O. Epileptic encephalopathies: Optimizing seizure control and developmental outcome. Epilepsia 2015; 56(10):1486-1489.

June CURE Update: Seizure Tracker and Amazon Alexa, Epilepsy Webinar, and Educational Events

Recently I had the pleasure of joining a panel of epilepsy experts at CURE’s Day of Science in Philadelphia. It was a terrific opportunity for those affected by epilepsy to connect with researchers and clinicians to learn about the most recent epilepsy research.

During the panel discussion, the audience had the opportunity to ask the experts questions about the process of finding a cure and how the epilepsy community can help advance research. Afterwards, the conversation between panelists and attendees continued in small group discussions. Several CURE grant recipients attended the event and contributed their thoughts on the importance of recent research.

It was heartwarming to see the positive impact that CURE’s Day of Science in Philadelphia had on those with epilepsy, and to see people leave the event feeling hopeful and inspired.

There will be more Day of Science events around the US this year, and you can find details about them in this update. Read on to also learn about: how Seizure Tracker integrates with Amazon Alexa; a free epilepsy webinar; applying to host a CURE-funded seminar; and our 20th Annual Chicago Benefit.

Record Seizure Activity with Seizure Tracker and Amazon Alexa

Voice control systems like Amazon Alexa have the potential to help improve access to electronic seizure diaries while increasing the accuracy of epilepsy-related data. Now Seizure Tracker can be used with Amazon Alexa voice commands to record the start and end times of seizures. Seizure Tracker logs data gathered from the Amazon Alexa, allowing patients to create and share reports with their doctors.

CURE’s Epilepsy Genetics Initative (EGI) is partnered with Seizure Tracker to enable patients and physicians to monitor seizure activity and understand its relationship with epilepsy-related treatments. Patients with information in both EGI and Seizure Tracker can now link their data and share it with researchers to advance our understanding of epilepsy.

Learn More

Mark Your Calendar for the Next Day of Science Events

CURE’s 2018 Day of Science events continue this month! At these free, educational events, a panel of epilepsy experts will discuss:

  • Medical Treatment Options
  • Epilepsy Genetics
  • Epilepsy Devices and Technology
  • Infantile Spasms and the Intractable Childhood Epilepsies

Day of Science is a unique opportunity to speak with local physicians and to connect with families in the epilepsy community.

Registration is now open for Day of Science Chicago on Saturday, June 16.

Save the date for CURE’s Day of Science events in the following cities:

Interested in volunteering? Please contact the Day of Science team at DOS@CUREepilepsy.org or 312-255-1801.

We are grateful to our sponsors Sunovion Pharmaceuticals and Mallinckrodt Pharmaceuticals. With their support, CURE’s Day of Science events are free to all those in the epilepsy community.

Free Webinar on Epilepsy, Memory, and Aging

Join us for a free webinar discussing Epilepsy’s Impact on Memory and Cognition Over Time on Monday, July 9, at 1:00PM CT. This presentation focuses on the course of cognitive and memory aging in people with chronic epilepsy, and factors that contribute to healthy cognitive and brain aging.

The webinar will be presented by Dr. Bruce Hermann, an expert in brain and cognitive aging. During a Q&A session with Dr. Hermann, you can ask questions like:

  • Can any measures be taken to prevent or combat the cognitive decline that accompanies getting older with epilepsy?
  • Does research suggest specific therapies to help prevent memory loss associated with epilepsy?
  • Are certain individuals with epilepsy more likely to experience cognitive decline as they age than others?

Learn More and Register Now

CURE Champion Spotlight: Dr. Patrice Jackson-Ayotunde Discovers New Chemical Formula to Treat Epilepsy

CURE Champions are people who are making a difference all over the US by hosting events to support CURE. Today we’re featuring CURE Champion Patrice Jackson-Ayotunde, PhD, and her recent fundraising and epilepsy research accomplishments.

Dr. Jackson-Ayotunde is Associate Professor of Pharmaceutical Sciences at University of Maryland Eastern Shore (UMES). After 7 years of research, she and her graduate student discovered a chemical formula that could lead to a new treatment for people with drug-resistant epilepsy. While their discovery recently received a US Patent, funding is needed to begin clinical research before this formula can be developed as a treatment for patients.

Read more about Dr. Jackson-Ayotunde’s discovery.

5th Annual 5k Strides for Epilepsy at University of Maryland Eastern Shore

Dr. Jackson-Ayotunde and the Pharmacy Student Government Association Executive Board members support CURE with the Annual 5k Strides for Epilepsy at UMES. Dr. Jackson-Ayotunde and the UMES School of Pharmacy and Health Professionals have promoted epilepsy awareness and raised funds for promising epilepsy research with this event for the past 5 years. Because of their efforts, Mayor Jake Day made an appearance at this year’s 5k and officially declared March 24 Epilepsy Awareness Day in Salisbury, MD.

CURE Champion Dr. Jackson-Ayotunde truly embodies our mission. We are so grateful for her and all our CURE Champions around the US who are using their talents to increase epilepsy awareness and raise funds to support our shared mission of finding a cure for epilepsy.

Learn how you can become a CURE Champion.

CURE Seminar Series Application Deadline Extended through June 26

The CURE Frontiers in Research Seminar Series application deadline has been extended to Tuesday, June 26. If you are a researcher or physician, apply now to host a CURE-funded seminar at your institution.

Approximately 10 seminars at different institutions are sponsored by CURE each academic year with one goal: to present cutting-edge epilepsy research to a wide audience of researchers, young investigators, students, and interested supporters.

The CURE Frontiers in Research Seminar Series is made possible thanks to the generous support of the Nussenbaum-Vogelstein family.

Decisions will be announced in July.

Learn More and Apply Now

20th Annual Chicago Benefit Save the Date: October 15, 2018

We are celebrating 20 years of CURE’s impact and emerging discoveries at the 20th Annual Chicago Benefit on October 15, 2018 at Navy Pier. This event will feature a reception, dinner, and music performance from a very special guest. For sponsorship and underwriting opportunities, please contact Mia Beans at Mia.Beans@CUREepilepsy.org or 312-626-1798.

Learn More

Next CURE Events

2018 PAME Conference (CURE-Sponsored) – June 14

Day of Science Chicago – June 16

CURE Night at Fifth Third Field – June 23

Webinar: Epilepsy’s Impact on Memory and Cognition Over Time – July 9

Now Accepting Applications for the CURE Seminar Series

The CURE Frontiers in Research Seminar Series application deadline is Tuesday, June 26th. If you are a researcher or physician, apply to host a CURE-funded seminar at your institution.

Approximately 10 seminars at different institutions are sponsored by CURE each academic year with one goal: to present cutting-edge epilepsy research to a wide audience of researchers, young investigators, students, and interested supporters.

The CURE Frontiers in Research Seminar Series is made possible thanks to the generous support of the Nussenbaum-Vogelstein family.

Decisions will be announced in July.

April 2018 CURE Update

I took a brief break from overseeing CURE’s research efforts last week to attend a CURE Benefit in Boston hosted by Anne Finucane & Mike Barnicle as well as Susan & David Axelrod. I’m so grateful to them for being such wonderful hosts and would like to thank all those who attended.

At the event, CURE’s founder Susan Axelrod spoke about the importance of epilepsy research and highlighted our plans to work with the Department of Defense on Post-Traumatic Epilepsy. I had the opportunity to speak about recent CURE-funded research that may lead to important diagnostic and treatment advances.

The 2018 Boston Benefit for the Cure was a wonderful opportunity to get together with members of our passionate community who are dedicated to finding a cure.

Couldn’t attend the Boston event? Read on… you can participate in other ways. Our next online webinar will feature news about promising anti-epileptic drugs in development. Or, if you’re looking to attend an event in-person, I’ve included information about CURE’s next Day of Science events as well as additional news and events that I’m excited to share with you.

Best regards,
Dr. Laura Lubbers

Promising Anti-Epileptic Drugs in Development ? Webinar

This free webinar will outline therapies in development for epilepsy and seizures, including promising therapies for patients with treatment-resistant epilepsy and children with severe epilepsy. The webinar will also focus on drugs that may not only reduce seizures, but improve treatment of the underlying disease.

Register Now

The webinar will be presented by Dr. Jacqueline French, a professor of Neurology in the Comprehensive Epilepsy Center at NYU Langone School of Medicine and Founder/Director of the Epilepsy Study Consortium. Dr. French’s presentation will be followed by an interactive Q&A session.

The information session is scheduled for Wednesday, April 18, 2018 at 1pm EDT / 2pm CDT. The webinar is free, but you do need to register.

View Past Webinars

2018 Epilepsy Scholarships: Application Deadline April 15

The deadline for CURE’s 2018 Educational Enrichment Fund (EEF) Scholarship is right around the corner! Applications are due to CURE by April 15, 2018 at 11:59pm CDT.

Made possible by the generous funding of Lundbeck, CURE’s EEF Scholarship program provides a one-time scholarship (up to $5,000) to be used toward coursework that will advance personal knowledge in the field of epilepsy as it relates to research, health education, awareness, and/or advocacy. Anyone diagnosed with epilepsy, immediate family members, and/or caregivers of someone with epilepsy are encouraged to apply.

Learn More or Apply Now

Register Now for Day of Science: Philadelphia and Chicago

CURE’s Day of Science event series kicks off in June! Day of Science is a free, educational, networking opportunity for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy.

Join us to hear about the latest in epilepsy research and what it means for patients and families, participate in a live Q&A with epilepsy expert panelists, and join small roundtable discussions with the experts. Registration is now open for CURE Day of Science at Children’s Hospital of Philadelphia and Lurie Children’s Hospital of Chicago. Additional locations will be announced in the coming months.

Interested in volunteering? Please contact the Day of Science team at DOS@CUREepilepsy.org or (312) 255-1801 if you are interested in volunteering in Philadelphia or Chicago.

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Get Your Limited Edition Hamil-Time T-Shirt

It’s Hamil-Time to find a cure for epilepsy! Get a limited edition Hamil-Time t-shirt, available exclusively on OMAZE’s website. HAMILTON’s Miguel Cervantes and his daughter Adelaide are shown here wearing the Hamil-Time t-shirts. Adelaide was diagnosed with epilepsy at just 7 months old. Proceeds from the Hamil-Time tee will support CURE’s mission of funding epilepsy research initiatives.

Buy Now

Infantile Spasms/Seizure Medication Access Survey for Families and Providers

Have you recently had problems accessing medications for Infantile Spasms or Seizures? The Infantile Spasms Action Network (ISAN), which CURE is a part of, wants to hear from families and providers like you. If your medication access has been limited by availability, payment difficulties, or other issues, tell ISAN about your experience. They will use this information to reduce barriers to medication access.

Take the Survey

Next CURE Events

Get Your Shoes On – FITT and Fashion for a Cure for Epilepsy
Promising Anti-Epileptic Drugs in Development
1:26 The Art of Epilepsy 2018
3rd Annual Ella’s Race for a Cure
Day of Science
All Upcoming Events