CURE Epilepsy Update: September 2021

Greetings CURE Epilepsy community,

Unite to CURE Epilepsy, our virtual community fundraising event, is only two short weeks away!
I hope you will join us on Friday, September 17th at 7pm CT for this free event that will bring together the community from around the world to help raise funds for research to find cures for the many types of epilepsy. For more information and to register to participate, click here.

Unite to CURE Epilepsy will be hosted by award-winning journalist, contributor to MSNBC’s?Morning Joe Mike Barnicle and feature Nils Lofgren, Miguel Cervantes, Chef Rick Bayless, and others, for an evening filled with engaging entertainment, moving stories from the epilepsy community, and promising updates from leading researchers.

We’d like to also invite you to host a Watch Party for your friends and family. Whether it’s 4 people in your living room or 40 in your backyard, a Watch Party is a great way to bring people together and share in the evening. Just check the box to host a watch party when you complete the registration form. As an Official Watch Party Host, you will receive a special packet containing additional information, educational materials, and more to help make your Unite to CURE Epilepsy viewing experience even better!

In this CURE Epilepsy update, please find information on:

Thank you for your enduring support of research toward a cure for epilepsy.


Become a Champion
Watch the Summit

We want to give a BIG THANK YOU to the Cunneens for being such
amazing Champions and raising over $85k at the 6th annual Ella’s Race event! They brought their whole neighborhood together and
surpassed their goal of $50k! We truly appreciate all of your support.

Whether you’re an established CURE Epilepsy Champion like the Cunneens or looking to create your first Champion event, check out our virtual summit to hear fundraisers’ stories on why and who they raise money for, and creative ideas for your own event.  You’ll learn strategies, tips, and tricks from some of our most successful CURE Epilepsy Champions. Every fundraiser held helps us raise crucial dollars for epilepsy research, and no event is too big or too small. Whether it’s a lemonade stand that raises $8 or an event like Ella’s race that raises over $85k, every dollar raised brings us a step closer to a cure.

Not sure where to start?
Check out the full summit video here


LAST CHANCE to Join Team CURE Epilepsy in New York and Los Angeles Marathons
Learn More

FINAL CALL! Run to fund research for a cure for epilepsy!
You don’t have to race to be first place to join Team CURE Epilepsy, we still have entry spots available for the 2021 TCS New York City Marathon and the Los Angeles Marathon.

Contact us to learn more about how you can?join?Team CURE Epilepsy and?run to support the 1 in 26 impacted?by?epilepsy.?Registration through CURE Epilepsy closes Sept 15th.

Register here:

NYC Marathon

LA Marathon


Free Webinar: Non-Epileptic Seizures: Diagnosis, Treatment, and Management Strategies
Learn More

This free webinar will help viewers recognize the signs, symptoms,
and history associated with the presentation and diagnosis of
non-epileptic seizures (NES), discuss the diagnosis of NES with patients and families to enable acceptance of treatment, and identify the management options available for patients with NES and their families.

The webinar will be presented on
Tuesday, September 28th
12:00 pm CDT

Register Here


What’s New from the Seizing Life® Podcast
Watch or Listen

Catch up on the latest episodes of our Seizing Life podcast, and listen in as we chat with:

  • CEO Beth Dean, who explains how CURE Epilepsy funds research, takes us through the process of reviewing scientific ideas, and clarifies how the organization’s approach allows researchers the opportunity to test and advance promising data that may be considered a little “risky”. Watch or Listen.
  • Dr. Charles Marcuccilli, who talks about why the many truths of epilepsy aren’t well-known and what patients, caregivers, and healthcare professionals can do to educate others and reduce epilepsy stigma. Watch or Listen.


Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.

 

CURE Epilepsy Update: August 2021

Greetings CURE Epilepsy community,

I hope that everyone is enjoying summer and the relaxing of the COVID-19 restrictions that the vaccines have brought us. Unfortunately, as I write this, our country is facing a resurgence of COVID-19 that rivals what we faced last winter. It reminds me how grateful I am for science, research, and discovery.

CURE Epilepsy is an organization rooted in science. It is in our DNA, figuratively of course. We exist to fund and drive scientific research so that we better understand the causes of seizures and epilepsy in pursuit of a cure. Through our research and the research of others, the epilepsy community has increased our understanding of the causes of epilepsy, identified genes associated with epilepsy, developed drugs to manage seizures, and identified risk factors for SUDEP. Through our research and the research of others, we will ultimately find cures so that we can live in a world without epilepsy.

One of the great learnings from this pandemic is that we can accelerate discovery by collaborating and focusing our resources. Our epilepsy community and other disease communities will be evaluating how we can leverage the COVID-19 vaccine experience to drive faster therapies and cures. Because the platform for mRNA vaccines existed and we had existing data on the structure, genome, and lifecycle of the coronavirus family, the scientific community was able to develop multiple vaccines for COVID-19 with amazing speed.

These vaccines underwent the same FDA-required development protocols (randomized, placebo-controlled clinical trials) as our antiepileptic drugs do. CURE Epilepsy encourages anyone who is eligible and has not yet been vaccinated to consult with their physician and discuss any concerns that you may have. We also have information on our website about the vaccine, including a video discussion with Dr. Elizabeth Thiele, Director of the Pediatric Epilepsy Program at Massachusetts General Hospital. Please be safe, get vaccinated, and protect one another!

In this CURE Epilepsy update, please also find information on:


Unite to CURE Epilepsy – Virtual Community Event – Friday, September 17th at 7pm CT
Register

On Friday, September 17th at 7pm CT join live host Mike Barnicle, award-winning journalist, contributor to MSNBC’s Morning Joe, and guests Nils Lofgren, Miguel Cervantes, Chef Rick Bayless, and others, for an evening filled with engaging entertainment, moving stories from the epilepsy community, and promising updates from leading researchers.

Be part of the fun! Host a Watch Party and connect with the broader CURE Epilepsy family.


My Shot at Epilepsy Raffle – Ends August 11 at 11:59pm CT
Buy raffle tickets

There’s just one day left to enter and win a once-in-a-lifetime experience to see the “friends and family” dress rehearsal of Hamilton before it returns to Broadway. Raffle tickets are $25 and up, and all funds raised will go to support funding critically needed research to find a cure for epilepsy. Don’t throw away your shot…Enter today and be in the room where it happens!


CURE Epilepsy Champion Summit – August 27
Register

Looking to create your first CURE Epilepsy Champion event? Or, are you are a current Champion looking to grow or refine your existing event? If either of these describes you, join us on Friday, August 27th at 12pm CT for our CURE Epilepsy Champion Summit. At this virtual summit, you will learn strategies from some of our most successful CURE Epilepsy Champions and discuss other ways to be involved.


Runs for a Purpose — August 15-29
Sign up

Run or walk anywhere you want and help raise money to fund research for a cure for epilepsy. On August 15-29 with the @RunsForAPurpose virtual race program, you select the distance of your choice (5K, 10K, or Half-Marathon), you receive the race package with t-shirt, medal, and finisher’s certificate, and all money your raise or donate benefits CURE Epilepsy. #DoGoodFeelGood


Team CURE Epilepsy Marathons in New York and Los Angeles
Sign up

We still have entries available in the Los Angeles and New York marathons! Contact us to learn more about how you can join Team CURE Epilepsy and run to support the 1 in 26 impacted by epilepsy.

Not quite ready for a full marathon? You can run a half-marathon with Team CURE Epilepsy in Los Angeles, too! Any questions? Email Brandon Laughlin


What’s New from the Seizing Life® Podcast
Watch or Listen

Catch up on the latest episodes of the Seizing Life podcast and learn about:

  • Lissy’s journey to receiving and addressing her daughter’s infantile spasms diagnosis, including why early detection and treatment are so important, where to find infantile spasms supports groups, and how awareness and education among parents, caregivers, and doctors can result in more positive outcomes for babies with infantile spasms. Listen or Watch
  • Dr. Steve White’s perspective on epilepsy, the state of epilepsy research, and the prospects for new discoveries and treatments given his role as epilepsy researcher, educator, and someone living with epilepsy. Listen or Watch
  • hree college students who share their perspectives on how to approach the transition to college if you live with epilepsy, including how to approach professors for accommodations, how to assert your independence, and how to take responsibility as a young adult living away from a parent for the first time. Listen or Watch


Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.

 

Epilepsy Research News: July 2021

This month I would like to highlight an editorial authored by myself and several colleagues discussing the critical needs for epilepsy research identified during the 2021 Curing the Epilepsies Conference. These needs include integrating epilepsy care and research and reducing health disparities for underserved communities. Key to these transformative changes is the development of a National Plan that would accelerate the goal of improving quality of life and developing cures for every person touched by epilepsy.

Next, we report the work of several CURE Epilepsy grantees and members of CURE Epilepsy’s Post-Traumatic Epilepsy Initiative. This publication, authored by Dr. Annamaria Vezzani, Dr. Teresa Ravizza, Rossella Di Sapia, and colleagues, investigates the role of microglia, a type of “immune” cell for the brain, in acquired epilepsy. This research suggests that interfering with the increase in microglia that is associated with acquired epilepsy may improve epilepsy outcomes.

We also feature an editorial from David Axelrod, husband of CURE Epilepsy founder Susan Axelrod, in which he writes that his daughter Lauren “faces another battle, not with epilepsy or the toll it’s taken, but with policy changes that could deny her and others with intellectual disabilities the life they choose in concert with their families and loved ones.”

This month’s news also features the development of new molecules from resin with promising properties as possible drugs against epilepsy. Researchers found that these molecules had an antiseizure effect in zebrafish larvae.

Summaries of these research discoveries and more can be found below.

Research Discoveries

  • Advancing Research Toward Epilepsy Cures: A new publication reviews outcomes from the 2021 Curing the Epilepsies Conference, which brought together patient advocacy organizations including CURE Epilepsy, researchers, and clinicians to discuss priorities that could significantly advance research toward cures and improved health outcomes for people with epilepsy. Critical needs for advancing epilepsy research include integrating epilepsy care and research, reducing health disparities for underserved communities and improving measurement and tracking of patient outcomes. The authors report that key to driving these transformative priorities is the development of a National Plan that would put the nation on a path to developing cures and improving the quality of life for every person touched by epilepsy. Learn more
  • Understanding Acquired Epilepsy: Researchers have found a way in which an increase in microglia (a type of immune cell for the brain) plays a role in different ‘phases’ of epilepsy. Using an animal model of acquired epilepsy, the researchers found that an increase in microglia during the early phases of epilepsy development contributes to degeneration of neurons in the brain, whereas increases in microglia after the development of epilepsy contributes to seizures. The authors suggest that interfering with increases in microglia may offer a potential target for improving acquired epilepsy. Learn more
  • Opinion Piece: When It Comes to People Like My Daughter, One Size Does Not Fit All: By David Axelrod. My daughter, Lauren, turned 40 last month. She is happy and healthy. And that is nothing short of a miracle. Today, Lauren faces another battle, not with epilepsy or the toll it’s taken, but with policy changes that could deny her and others with intellectual disabilities the life they choose in concert with their families and loved ones. The issue is federal Medicaid funding to states, which helps underwrite residential facilities for people with intellectual disabilities, and the conviction of some advocates and policymakers that larger settings like Misericordia, where Lauren lives, should be discouraged. Learn more
  • “Big Data” to Improve Pediatric Seizure Control: Researchers have demonstrated how to use standardized reporting of clinical data for seizures, providing fundamental information to determine what methods work best for keeping seizures under control. To help standardize how clinical data is recorded at epilepsy visits, the team of researchers began using common data elements (standardized key information that can be collected across studies) to ensure that relevant data is captured in a comparable way across studies and clinical visits. The study provides fundamental data that will serve as the foundation for treating individuals with epilepsy to achieve the best patient-centered outcomes possible. Learn more.
  • New Drug from Resin to Combat Epileptic Seizures: Researchers have developed new molecules with promising properties to become possible drugs against epilepsy. This research centers around a potassium ion channel found in the brain that plays an important role in epilepsy. The researchers have shown that several of the new resin acid molecules can open the channel and produce an antiseizure effect in zebrafish larvae. The scientists are now continuing to work towards a detailed understanding of how the resin acid molecules affect ion channels, and how they can be improved and developed as drugs. Learn more

CURE Epilepsy Update: July 2021

Greetings CURE Epilepsy community,

In January of this year, the epilepsy community came together for the Curing the Epilepsies Conference. This conference, which occurs every seven years or so, sets the priorities to help advance research toward cures and improved health outcomes for people with epilepsy. Following this conference, members of the epilepsy advocacy group community, including CURE Epilepsy’s Chief Scientific Officer, Laura Lubbers, wrote an editorial highlighting the critical needs to achieve this goal, which include integrating epilepsy care and research and reducing health disparities for underserved communities. They also noted that creating a National Plan that would accelerate the goals of improving quality of life and developing cures for every person touched by epilepsy is key to attaining these transformative changes.

One of the many ways that we at CURE Epilepsy support these goals is to inspire students to pursue careers and become the future of epilepsy research. That’s why we’re happy to announce our 2021 class of Education Enrichment Fund scholars. From aspiring artists to budding neuroscientists, these exceptional students aim to become agents of change within the epilepsy community.

In this CURE Epilepsy update, please find information on:


Editorial: Epilepsy Community at an Inflection Point, by CURE Epilepsy’s Chief Scientific Officer Dr. Laura Lubbers

Read

Following up on the Curing the Epilepsies Conference, CURE Epilepsy Chief Scientific Officer Dr. Laura Lubbers, Scientific Advisory Council member Dr. Eric Marsh, and others from the epilepsy community share their perspectives on the critical needs for epilepsy research in an editorial in Epilepsy Currents. Read their thoughts here.


CURE Epilepsy Announces 2021 Education Enrichment Fund Scholars

Read More

CURE Epilepsy, in partnership with Greenwich Biosciences, was pleased to announce the 2021 class of Education Enrichment Fund (EEF) Scholars last month. Our ten scholars will together receive $50,000 to advance their education while working to build a brighter future for those impacted by epilepsy. Read more about each individual and how they plan to become agents of change within the epilepsy community.


CURE Epilepsy Champion Summit – August 27
Register

Looking to create your first CURE Epilepsy Champion event? Or, are you are a current Champion looking to grow or refine your existing event? If either of these describes you, join us on Friday, August 27th at 12pm CT for our CURE Epilepsy Champion Summit. At this virtual summit, you will learn strategies from some of our most successful CURE Epilepsy Champions and discuss other ways to be involved.


Unite to CURE Epilepsy Benefit on September 17

Learn More

Join live host Mike Barnicle, award-winning journalist, contributor to MSNBC’s Morning Joe, and Julia’s dad, for an evening filled with engaging entertainment, moving stories from those in the epilepsy community, and promising updates from leading researchers. Be part of the fun! Host a Watch Party and connect with the broader CURE Epilepsy family.

Visit our website for more information and to register.


Team CURE Epilepsy Entries Available for the LA and NY Marathons
Sign up

We still have spots available in the Los Angeles and New York marathons! Contact us to learn more about how you can join Team CURE Epilepsy and run to support the 1 in 26 impacted by epilepsy.


Matt Schneider, JD joins the CURE Epilepsy Board of Directors

Learn More

Please welcome Matthew Schneider, JD, to the CURE Epilepsy board! Matt refers to epilepsy as “the family business” since four of his loved ones live with epilepsy. Matt first joined the CURE Epilepsy research committee and looks forward to serving on the CURE Epilepsy board with particular interest around the genetics of epilepsy and data driven approaches to finding cure(s).


Free webinar from PAME on July 16: Sleep, Night, and SUDEP

Register

Understanding the connection between night, sleep, and SUDEP may provide clues to improving preventive measures. Join PAME, Friday, July 16 at 11:00 am CT for a free 90-minute webinar to learn about the latest in basic science and clinical research on sleep, circadian rhythms, and SUDEP. Clinicians, scientists, advocates, people with epilepsy, and family members are welcome to participate.


New from the Seizing Life®, a CURE Epilepsy Podcast
Watch or Listen

Catch up on the latest episodes of our?Seizing Life?podcast and hear about:

  • Geoff’s grieving process after losing his wife to SUDEP, including what he has personally found helpful, helping his son cope with the loss, and raising awareness about SUDEP: Watch or Listen.
  • Jon’s 50-year journey with epilepsy, a microcosm of what has been accomplished, and a directive highlighting the work that remains: Watch or Listen.


Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.

 

CURE Epilepsy Update: June 2021

Greetings CURE Epilepsy community,

As summer warms the air and the news out of the Centers for Disease Control becomes more optimistic, more opportunities to engage with each other are opening up. For Team CURE Epilepsy, that means it’s time to get running again! We have secured entries in the Bank of America Chicago Marathon, the Los Angeles Marathon, and other events soon to be announced.

We are also excited to announce that our annual Unite to CURE Epilepsy benefit is taking place on Friday, September 17th. The event will be virtual to enable anyone in the world who wants to participate and support research for a cure for epilepsy can join us. New this year, we’ve added the opportunity to host a Watch Party and connect with the greater CURE Epilepsy family.

In this CURE Epilepsy update, please find information on:


ReSearching to CURE Epilepsy: Spring 2021 Report

Read

Our Spring 2021 ReSearching to CURE Report has arrived! Learn about our work on Infantile Spasms, SUDEP, treatment-resistant epilepsy, and the amazing research that our 2020 grantees are embarking upon. Victor and Libby Boyce, parents of beloved actor Cameron Boyce, are also featured discussing their son’s legacy and why they are committed to supporting research toward a cure.


Robert Withrow Wier Challenge Grant: Help Unlock Funds for Research for a Cure

Donate

The Robert Withrow Wier Challenge Grant will match new gifts dollar-for-dollar until we reach $250,000. This includes gifts from first-time donors and past donors who did not make a gift in 2020. The Robert Withrow Wier Challenge Grant will only be unlocked once we raise $250,000 in new gifts. Even small gifts make a big difference! Please make a gift now and help us accelerate research toward a cure.


Become a CURE Epilepsy Champion!
Register

Looking for a way to support funding research to find a cure? Become a CURE Epilepsy Champion. Our champions are committed to spreading epilepsy awareness and FUNdraising for epilepsy research. Create an event like the Cunneen family, who host Ella’s Race every summer in honor of their daughter who is impacted by epilepsy. Learn more about becoming a champion and hosting your own event here.


Save the Date: Unite to CURE Epilepsy Benefit on September 17

Learn More

Join live host Mike Barnicle, award-winning journalist, contributor to MSNBC’s Morning Joe, and Julia’s dad, for an evening filled with engaging entertainment, moving stories from those in the epilepsy community, and promising updates from leading researchers. Be part of the fun! Host a Watch Party and connect with the broader CURE Epilepsy family.

Visit our website for more information and to register.


Los Angeles Marathon Spots Are Available!

Register

Good news, marathon runners. . . CURE Epilepsy has secured 5 charity spots in the Los Angeles Marathon! Contact us to learn more about how you can run to support the 1 in 26 impacted with epilepsy. Interested in running other 2021 marathons with Team CURE Epilepsy? Look for additional information on our social media channels during the month of June.


New from the Seizing Life®, a CURE Epilepsy Podcast
Watch or Listen

Catch up on the latest episodes of our?Seizing Life?podcast and hear:

  • How Lauren Panco has navigated workplace challenges and the effect epilepsy has had on her career: Watch or Listen.
  • How one boy with epilepsy and his mom made a difference for 12,000 kids with epilepsy in their state: Watch or Listen.


Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.

 

Epilepsy Research News: June 2021

This month’s research news includes findings from CURE Epilepsy Post-Traumatic Epilepsy (PTE) Initiative member Dr. Elisa Zanier and colleagues, who have conducted a detailed characterization of a mouse model of traumatic brain injury (TBI) that they hope can be used to help pinpoint who is at risk for PTE following TBI. The findings from a study by former CURE Epilepsy grantee Dr. Scott Baraban and colleagues examining catastrophic childhood epilepsies using zebrafish with genetic mutations is also highlighted below.

We further report advances on potential ways to predict sudden unexpected death in epilepsy (SUDEP) risk based on information routinely gathered in clinical visits. Though this research is still in the preliminary phase, the researchers hope this method will make clinical discussions regarding SUDEP more targeted and useful.

Summaries of these research discoveries and more can be found below.

Research Discoveries

  • In-Depth Characterization of a Mouse Model of Post-Traumatic Epilepsy (PTE) (Featuring the research of several members of CURE Epilepsy’s PTE Initiative, including Dr. Elisa Zanier): A team of researchers featuring several members of CURE Epilepsy’s PTE Initiative, including Dr. Elisa Zanier, has recently characterized a mouse model of severe traumatic brain injury (TBI). The researchers state that their extensive characterization of this model provides a way to identify sensitive measures of epilepsy development that may be used to understand ways to predict PTE in high-risk TBI patients. Learn more
  • Understanding Childhood Epilepsy (Featuring the research of former CURE Epilepsy researcher Dr. Scott Baraban): Dr. Scott Baraban and colleagues have used zebrafish with genetic mutations to model human catastrophic childhood epilepsies, which are characterized by hard-to-treat seizures and are frequently associated with developmental delays. The team has created an open-source database containing information from this study and is offering these zebrafish lines as a resource to the neuroscience community, hoping they can lead to the identification of new therapies. Learn more
  • Improving Ways to Predict SUDEP Risk: A study has found that a particular type of data analysis called a Bayesian logistic regression model provides a more accurate prediction of risk for SUDEP than traditional population-based estimates. The study authors state that they developed and validated the first predictive model for individualized SUDEP risk, based on routine clinical information. Learn more
  • Rethinking Antiseizure Medication Use in Newborns: In a recent study, researchers observed no difference in developmental outcomes among children aged 24 months who had acute seizures in the hospital as newborns, regardless of whether or not antiseizure medication was stopped or continued after the children left the hospital once seizures ended. The authors concluded that the results support discontinuing antiseizure medication for most newborns with acute symptomatic seizures (seizures that are associated with an “insult” or injury to the central nervous system), so long as the seizures stop before the newborn is discharged from the hospital. Learn more.
  • Employer Toolkit to Support People with Epilepsy: A new Employer Toolkit has launched in the United Kingdom (UK) this week to better support people with epilepsy in the workplace. The new toolkit is designed to give employers the confidence to help staff with epilepsy. Please note, the UK has its own regulatory and employment laws which may not be applicable in the United States or other countries. Learn more

Epilepsy Research News: May 2021

This month’s research news features the discovery that the tonic phase of a seizure along with failure of the respiratory system is associated with sudden death in a mouse model of epilepsy. This research, featuring the work of CURE Epilepsy grantee Dr. Ian Wenker, brings scientists closer to understanding ways to prevent sudden unexpected death in epilepsy (SUDEP).

Also included in this month’s news is work by former CURE Epilepsy grantee Dr. Moushin Shafi and co-authors indicating that some hospitalized patients with COVID-19 experience non-convulsive seizures, which are associated with higher rates of death and a longer hospital stay.

Finally, we report advances in EEG and imaging technology to better pinpoint the location of seizures in the brain as well as the creation of an updated “language” to describe seizures that may improve the diagnosis of epilepsy.

Summaries of these research discoveries can be found below.

Research Discoveries

  • Sudden Unexpected Death in Epilepsy (Featuring the research of CURE Epilepsy grantee Dr. Ian Wenker): New research has found that the tonic phase of a seizure is associated with sudden death in a mouse model of epilepsy. In this research, death was associated with apnea – or the failure to breathe – during the tonic phase, along with subsequent failure to resume breathing. Based on this research, the authors identified potential approaches to stimulate breathing in the mice and prevent death after a seizure. Learn more
  • COVID-19 and Seizures (Featuring the work of former CURE Epilepsy grantee Dr. Moushin Shafi): A new study indicates that some hospitalized patients with COVID-19 experience non-convulsive seizures, which may put them at a higher risk of dying. “Seizures can happen in patients with COVID-19 critical illness, even those without any prior neurologic history, and they are associated with worse outcomes: higher rates of death and a longer hospital stay, even after adjusting for other factors,” says co-senior author Dr. Mouhsin Shafi. Dr. Shafi notes that the results suggest that patients with COVID-19 should be monitored closely for non-convulsive seizures. Learn more
  • EEG Technology to Pinpoint Seizures in the Brain: New research seeks to establish a safer, more cost-effective, and quicker way to pinpoint brain tissues responsible for seizures in people with epilepsy. This research uses non-invasive electroencephalography (EEG) technology along with the development of a novel machine learning algorithm to automatically identify and link certain types of brain activity, creating a way to “mark” the area of the brain exhibiting epileptic activity. The authors note that this work may offer new, noninvasive tools to improve epilepsy treatments. Learn more.
  • Imaging Technology to Pinpoint Seizures in the Brain: An advanced imaging approach that creates 4D brain maps to locate areas of the brain responsible for seizures was evaluated in a small study and shows promise. The approach uses an enhanced form of a type of brain imaging called positron-emission tomography, or PET, which measures glucose use in the brain. Though the researchers say a larger study is needed to fully assess the potential of this approach, it holds promise to allow doctors to pinpoint the spot in the brain that is triggering seizures. Learn more
  • Diagnosing Epilepsy: A team of scientists have created an updated “language” to improve epilepsy research and diagnosis. This language has been incorporated into the Human Phenotype Ontology, a standardized vocabulary of many different human diseases that is used to help interpret genetic results. The authors note that this refined language, which includes updated seizure classification, can ultimately improve epilepsy diagnosis and precision treatment of epilepsy. Learn more.
a younger man hugs his elderly father from behind as they smile at the camera

CURE Epilepsy Update: May 2021

Greetings CURE Epilepsy community,

May is Mental Health Awareness Month, an opportunity for the epilepsy community to raise awareness and challenge stigma about mental health concerns specific to people with epilepsy. One-third of people with epilepsy also have a comorbid psychiatric condition, with anxiety and depression being the most common. Mental health conditions can impact the quality of life, and stress can affect seizures.

To learn more about epilepsy and mental health, watch or listen to the Seizing Life episode “Epilepsy and Mental Health: What You Should Know featuring Dr. Andres Kanner” or the webinar “Anxiety and Depression Associated with Epilepsy.”

In this CURE Epilepsy update, please also find information on:

Thank you for your enduring support of research toward a cure for epilepsy.

Beth Lewin Dean, CEO


Epilepsy and Aging Webinar on May 27
Register

Epilepsy is the third-most common neurological disorder in people ages 65 and older after stroke and dementia, conditions which themselves increase seizure risk. Join us Thursday, May 27 at 2pm CT as Dr. Alice Lam discusses the relationship between epilepsy, dementia, and stroke, and whether people with epilepsy have an increased chance of developing dementia as they age. Viewers will also learn about strategies that people with epilepsy can implement to reduce their risk for these conditions.


Robert Withrow Wier Challenge Grant: Help Unlock Funds for Research for a Cure
Donate

The Robert Withrow Wier Challenge Grant will match new gifts dollar-for-dollar until we reach $250,000. This includes gifts from first-time donors and past donors who did not make a gift in 2020. The Robert Withrow Wier Challenge Grant will only be unlocked once we raise $250,000 in new gifts. Even small gifts make a big difference! Please make a gift now and help us accelerate research toward a cure.


Running for Research – Thank You!
Learn More

Our deepest thanks to all of our #TeamCUREepilepsy Champions who ran, walked, and fundraised for research to find a cure for epilepsy! Did you miss the Run for Research virtual marathon, or is running not for you? You can still be part of the Team! Find out how you can be a Champion here.


PAME Webinar: Understanding Disparities in Epilepsy Mortality – Global and National Perspectives on May 18
Register

Partners Against Mortality in Epilepsy (PAME) is hosting a free webinar on Tuesday, May 18 at 11am ET exploring racial, ethnic, economic, and geographic differences in epilepsy-related mortality. Families, advocates, and professionals are welcome to participate.


New from Seizing Life, a CURE Epilepsy Podcast

Catch up on the latest episodes of our Seizing Life podcast and listen as:

  • Author and journalist Liane Kupferberg Carter speaks to us about her journey raising a son with a dual diagnosis of autism and epilepsy. Watch or listen.
  • Elissa Moore recounts her family’s frustrating journey to an epilepsy diagnosis for her son, the debilitating physical and mental side effects of medication, and the challenges they encountered in pursuit of the right treatment. Watch or listen.


Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.

 

CURE Epilepsy Update: April 2021

Greetings CURE Epilepsy community,

As we celebrate Autism Awareness, Siblings Day, and Volunteer Appreciation Week this month, we are fortunate to have many opportunities to more formally recognize so many members of our epilepsy community. I hope you will take advantage of this opportunity to not just celebrate our epilepsy community members, but to learn more about issues like autism that often intersect with epilepsy.

I also want to draw special attention to the upcoming deadline to apply for the Education Enrichment Fund, a one-time scholarship of up to $5,000 for an individual with epilepsy, their loved one, or their caregiver. Our EEF scholars represent the future of epilepsy advocacy, epilepsy research, and the promise of a future free from seizures. Those interested should submit their application by April 15.

In this CURE Epilepsy update, please also find information on:

Thank you for your enduring support of research toward a cure for epilepsy.

Beth Lewin Dean, CEO


April is Autism Awareness Month
Learn More

Did you know that epilepsy and autism spectrum disorder are sometimes interconnected? Roughly one-third of people with epilepsy also have autism. Find out about the connections between epilepsy and autism in our webinar, The Epilepsy-Autism Connection: Research, Diagnosis, and Treatment and mark your calendars for the Seizing Life episode, Epilepsy and Autism with Liane Kupferberg Carter on April 14.


National Siblings Day – April 10
Learn More

In honor of National Siblings Day, we have two opportunities for you to learn more about the impact of epilepsy on siblings.


Run to Support Epilepsy Research
Register

Much like a marathon runner, research must continue to push forward until we reach the finish line: a cure for epilepsy. Join Team CURE Epilepsy Champions of all different fitness levels for a virtual marathon this spring to help raise funds to find a cure. We encourage everyone to post pictures on social media to connect with Team CURE Epilepsy runners around the world using the hashtag #TeamCUREepilepsy. Don’t want to run 26.2 miles? You can still be part of the Team by running a shorter distance, walking, or simply by raising critical research dollars!


Education Enrichment Fund Scholarship Application Due April 15
Apply Now

The community of people endeavoring to improve the lives of those living with epilepsy goes well beyond our nurses, doctors and researchers. We are indebted to the advocates, journalists, lawyers, bloggers, educators, social workers, and everyone else who acts as an agent of change for the epilepsy community!

CURE Epilepsy, along with Greenwich Biosciences, is committed to supporting those who support the community via our Education Enrichment Fund (EEF). The EEF provides 10 one-time scholarships of up to $5,000 to support coursework in the scholars’ chosen fields so that they can use their knowledge and skills to become agents of change in the epilepsy community. The scholarships will be awarded to people living with epilepsy, their loved ones, or caregivers who are seeking to advance your personal knowledge in the field of epilepsy, as it relates to research, health education, or advocacy. Applications are due April 15, 2021.


National Volunteer Week is April 18-24
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CURE Epilepsy is so proud to recognize and honor our volunteers, without whom our work wouldn’t be possible. Watch our social media between April 18 and April 24 to learn about the people volunteering to support us in our mission to find a cure for epilepsy.


New from Seizing Life, a CURE Epilepsy Podcast

Catch up on the latest episodes of our Seizing Life podcast. Listen as we share:

  • What can you do as a parent to help your child navigate adolescence while also dealing with a difficult health condition? Watch or listen.
  • Thoughts from husband-and-wife advocates for Epilepsy Canada, our strategic partner, on community, fatherhood, and seizures. Watch or listen.
  • Two college students discussing their experiences growing up with a sibling who has epilepsy, their advice to other families, and their plans for the future. Watch or listen.


Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.

 

CURE Epilepsy Update: March 2021

Greetings CURE Epilepsy community,

This month I want to highlight the importance of community advocacy in helping pass important state and federal legislation that will benefit people with epilepsy. Recently Congress introduced The Research Investment to Spark the Economy (RISE) Act. The bill’s purpose is to authorize supplemental funding to mitigate the negative effects of the COVID-19-related laboratory closures and disruptions on research already in progress. The bill would authorize $25 billion in funding and includes $10 billion for the National Institutes of Health (NIH) to address the massive setbacks in life-saving research that occurred because of pandemic. Find out how you can add your voice to revive work on a cure for epilepsy.

Other key places that CURE Epilepsy is making sure its voice, and the voice of the epilepsy community, are heard include:

In this CURE Epilepsy update, please also find information on:

As always, thank you for continuing to support research toward a cure for epilepsy.

Beth Lewin Dean, CEO


CURE Epilepsy participates in Purple Day, March 26
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Purple Day (March 26) is a yearly effort to raise awareness about epilepsy worldwide. This year, CURE Epilepsy will be participating in the Purple Day® Around the World 2021 Virtual Epilepsy Education Conference. Dr. Scott Perry, Medical Director of Neurology at Cook Children’s in Texas, and Hillary Savoie–writer, writer, rare disease advocate, and a mother of a determined little girl named Esme–will be discussing patient participation in epilepsy clinical trials as part of the Purple Day conference taking place March 24-25. You can watch our video and other interesting content by registering for the conference here.


Get Involved! Run for Research, Bank of America Marathon, and other CURE Epilepsy Champion events
Register

Looking for a fun way to run and raise money to help find a cure for epilepsy? Join CURE Epilepsy’s virtual Run for Research from April 26 to May 2. Run 26.2 miles over the course of a one-week period for the 1 in 26 Americans living with epilepsy. Until we can run together in the fall, CURE Epilepsy Champions of all fitness levels will run independently to raise funds to find a cure.

Looking to run a marathon this October? CURE Epilepsy has secured 5 charity spots in the Bank of America Chicago Marathon being run on Sunday, October 10. Find out more about how you can join Team CURE Epilepsy.

Looking for a way to help spread awareness of the importance of epilepsy research and help fundraise at the same time? Become a CURE Epilepsy Champion. Learn more!


Webinar (March 22): Women’s Health: Complex Interactions of Epilepsy, Medications, and Hormones
Register

In honor of Women’s History Month, join us Monday, March 22 at 12pm CT for a free webinar on women’s health and epilepsy. In this webinar, Dr. Page B. Pennell will discuss how epilepsy and anti-seizure medications can affect hormones and reproductive health, how sex steroid hormones can affect anti-seizure medications and seizure control, and how the menopausal transition can affect epilepsy.


Apply for an Epilepsy Enrichment Fund scholarship. Applications due April 15, 2021
Apply Now

The deadline to submit your application for the Education Enrichment fund is approaching! Made possible by Greenwich Biosciences, this is a one-time scholarship of up to $5,000 for those living with epilepsy, family members, or caregivers to help them become an agent of change in the epilepsy community.


New from Seizing Life, a CURE Epilepsy Podcast

Catch up on the latest episodes of our Seizing Life podcast. Listen as we share:

  • The Best of 2020, a small sample of the stories and guests who provided us valuable information and hope during 2020. Watch or listen
  • The story of a newly diagnosed epilepsy patient navigating her new reality, and how she approaches her new life with epilepsy. She offers advice for fellow patients, and encourages those who can to advocate for themselves. Watch or listen


Do you have a story you want to tell about how epilepsy has impacted your life, your family, or your community? Please share your epilepsy truth on our website.