Researcher Update: June 2021

In this month’s update, please find information on:


Deadline to Submit Letters of Intent for a CURE Epilepsy Catalyst Grant is June 30, 2021

The deadline for CURE Epilepsy Catalyst Award grant Letters of Intent is fast approaching. This funding opportunity is available to researchers at non-academic research institutions, including small biotechnology companies, and those at universities who seek to develop new interventions for epilepsy. Applicants with academic appointments must be at or above the level of Assistant Professor. International applicants are invited to apply as well. Grant requests may be made for up to $250,000, paid over 2 years.

FUNDING CYCLE:

Letter of Intent deadline: Wednesday, June 30, 2021, 9 PM ET
Full proposal invitations: Friday, August 6, 2021
Full proposal deadline: Friday, September 10, 2021, 9 PM ET
Anticipated awardee notification: December 2021-January 2022
Anticipated award start date: March 2022

 


Requests for CURE Epilepsy-Sponsored Research Seminars – Applications Due July 30, 2021

Bring innovative epilepsy researchers and cutting-edge science to your institution this fall by hosting a CURE Epilepsy Frontiers in Research Seminar! The purpose of these seminars is to expose researchers, clinicians, and students to exciting epilepsy research and provide opportunities for young investigators to interact with leaders in the field.

The CURE Epilepsy Frontiers in Research Seminar series is generously supported by the Nussenbaum-Vogelstein Family.


Xlerat-ing IDeAs Conference: Experiences from the Southeast on June 23-24, 2021

The XLerat-ing IDeAs Conference: Experiences from the Southeast will provide important insights on applying for small business grants through the NIH, National Science Foundation (NSF), and other governmental agencies. This virtual conference is intended to help inform and inspire those who are interested in or plan to submit for an upcoming small business innovation research/small business technology transfer (SBIR/STTR) solicitation.


Workshop: From Brain to Bedside: Translation of Next-Generation Circuit Therapies on June 29-30, 2021

The Translation of Next-Generation Circuit Therapies Workshop will focus on the use of innovative and novel tools, which includes optogenetics, chemogenetics, and gene editing, as well as cutting-edge approaches to neuromodulation. Sessions will discuss existing approaches to circuit manipulation, advances in gene therapy approaches, and how they may inform future CNS circuit therapies.

Registration for this virtual workshop is free and now open.

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

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 also find information on:

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

Beth Lewin Dean, CEO


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.


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.


Become a CURE Epilepsy Champion!
Learn More

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.


New from Seizing Life, a CURE Epilepsy Podcast

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.

 

Researcher Update: May 2021

In this month’s update, please find information on:


Accepting Letters of Intent for CURE Epilepsy Catalyst Award Starting June 1, 2021

The CURE Epilepsy Catalyst Award is available to researchers at non-academic research institutions, including small biotechnology companies, and universities who seek to develop new interventions for epilepsy. Applicants with academic appointments must be at or above the level of Assistant Professor. International applicants are welcome. Requests may be made for up to a total of $250,000 paid over 2 years.

FUNDING CYCLE:

Open call for Letters of Intent: Tuesday, June 1, 2021
Letter of Intent deadline: Wednesday, June 30, 2021, 9 PM ET
Full proposal invitations: Friday, August 6, 2021
Full proposal deadline: Friday, September 10, 2021, 9 PM ET
Anticipated awardee notification: December 2021-January 2022
Anticipated award start date: March 2022

 


Postdoctoral Fellowship in Traumatic Brain Injury (TBI) and Concussion Epidemiology at the Penn Injury Science Center

The Penn Injury Science Center (PISC) is seeking postdoctoral fellows interested in traumatic brain injury (TBI) and concussion to conduct epidemiologic research related to clinical management, policy, and prevention. The position will be for an initial 1-year with opportunity for renewal for up to 2 additional years. Competitive annual salary (NIH-level minimum will be ensured) and benefits are provided. Information about the postdoctoral training program at the Penn Injury Science Center is available here.

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.

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 Seizure (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
Learn More

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
Learn More

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.

 

CURE Epilepsy Joins CDC Coalition in Asking for $10 Billion for Centers for Disease Control Programs

CURE Epilepsy has joined 192 members of the CDC Coalition and other supporting state and national organizations urging U.S. lawmakers to provide at least $10 billion for the Centers for Disease Control and Prevention’s programs in the FY 2022 Labor, Health and Human Services, Education and Related Agencies Appropriations bill.

CDC programs are crucial to reducing health care costs and protecting the health of the American people, yet have been woefully underfunded. The letter states that Congress should prioritize funding for all of the activities and programs supported by CDC, which includes research into a cure for epilepsy.

CURE Epilepsy Joins Coalition Asking Governors to Prioritize People With Rare Diseases for COVID-19 Vaccine

CURE Epilepsy has signed on to a letter from a coalition led by the Tuberous Sclerosis Alliance that asks the National Governors Association to prioritize people with rare diseases, including rare epilepsies, and their caregivers for COVID-19 vaccine distribution.

Sixty-nine advocacy organizations, healthcare providers and biotech companies formed a coalition urging the governors of U.S. states to include people with rare diseases and their caregivers in the current and high-risk phases of their state’s vaccination rollout. People with rare diseases, including rare epilepsies, can have severe comorbidities and be at increased risk of catastrophic outcomes of COVID-19 infection. They may require daily hands-on care from their caregivers, and if those caregivers are exposed to the virus, isolation from those they care for could cause severe, irreversible damage.