Greetings Epilepsy Community,
Mental health remains an ongoing concern within the epilepsy community, with over 30% of people with epilepsy having a comorbid psychiatric disorder such as depression or psychosis. It’s important that we increase the conversation around the diagnosis, treatment, and challenges that people with mental health issues have in general and within our community. To support this effort, we hosted a webinar on this issue on May 5, and will also be sharing additional insights on our May 11 Seizing Life® episode. You can find additional resources to help with mental health education, awareness, and advocacy on our website.
On a more celebratory note, we are quickly approaching June 1, when we will gather together in honor of the advances research has made at the CURE Epilepsy Annual Benefit in Chicago. And speaking of research, we are excited to announce our newest Catalyst Grantees below. We look forward to seeing their work over the next two years and the impact it will have on the epilepsy community.
In other exciting news, I was honored to have been selected to participate in the Milken Institute’s FastCures LeadersLink Program. The program aims to help promising nonprofit research leaders from around the world build high-performing organizations and facilitate the growth of their peer support network. The connections I will build and the knowledge I will gain through this program will help to further advance CURE Epilepsy’s mission to find a cure.
Through research there is hope.
In this CURE Epilepsy Update, please find information on:
- CURE Epilepsy’s 2022 Annual Benefit
- Mental Health Awareness Month
- Webinar Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research
- CURE Epilepsy Catalyst Grantees
- CURE Epilepsy Discovery
- CURE Epilepsy’s CEO, Beth Lewin Dean, Selected for FasterCures LeadersLink Program
- 1 in 26 Epilepsy Awareness Campaign
- Join Team CURE Epilepsy at the Chicago Triathlon
- New from the Seizing Life® Podcast
- New Item in the CURE Epilepsy Store
- Key Dates on the Epilepsy Calendar
CURE Epilepsy’s 2022 Annual Chicago Benefit
Miss our earlier announcement for the upcoming CURE Epilepsy 2022 Annual Benefit? Visit the Benefit Site for all the details on this amazing evening, including our exciting musical guests, Barenaked Ladies! Your support has helped advance science to find a cure and your ongoing generosity inspires our researchers and clinicians to continue to drive science forward on behalf of the community.
This May, we shine a light on epilepsy and mental health. Mental health is an extremely important topic for those with epilepsy as studies have shown that approximately one-third of people with epilepsy experience some form of psychiatric disorder. To learn more about the relationship of epilepsy with psychiatric disorders, visit our Mental Health Awareness Month webpage, listen to our Seizing Life “Mental Health and Epilepsy: What You Should Know” podcast, watch our webinar “Anxiety and Depression Associated with Epilepsy”, and watch our recent webinar from May 5. Additionally, we will be premiering a new Seizing Life on epilepsy and mental health on Wednesday, May 11, so please tune in.
Webinar: Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research
According to recent studies, Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age. This webinar will discuss what we know about SUDEP, specifically in the rare epilepsy community, as well as what parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. Presenters will share ideas on how to discuss SUDEP with doctors, from both the perspective of a physician and a parent of a child diagnosed with a rare genetic epilepsy who has educated themselves about SUDEP and taken steps to reduce the risk of SUDEP for their child.
CURE Epilepsy Catalyst Award Grantees
We are delighted to announce our most recent CURE Epilepsy Catalyst Award grantees. The Catalyst Award is a two-year, $250,000 grant that supports the nimble development of data necessary to advance ideas towards clinical trials
- Drs. James Pauly, Matthew Gentry, and Greg Gerhardt from the University of Kentucky will be studying “Safety and Biodistribution of a Novel Enzyme-Antibody Fusion in a Canine Model”. This research will test the safety and brain distribution (in canine models) of a novel drug that they hope will help treat a devastating and fatal childhood epilepsy known as Lafora disease.
- Dr. John Gledhill from Cognizance Biomarkers, LLC is working on “Confirmation of Plasma Biomarkers that Predict Seizure control in People with Newly Diagnosed Focal Epilepsy”. Dr. Gledhill and his team are seeking to develop an algorithm to predict response to initial antiseizure medications using a blood test. If successful, this study would provide doctors the ability to predict whether typical treatments for newly diagnosed epilepsy patients will work and will help them get to effective treatments more quickly.
CURE Epilepsy Discovery
For his CURE Epilepsy “Prevention of Acquired Epilepsies” grant, Dr. Xiaoming Jin and his team sought to understand the role of two related signaling pathways called TLR4 and RAGE, in the development of post-traumatic epilepsy (PTE) following brain injury in mice. Research to assess what happens in the brain after a traumatic brain injury (TBI) is crucial to discovering possible therapeutic options to prevent epilepsy from developing. Data from Dr. Jin’s lab gives hope that blocking either of these pathways may one day prevent PTE.
CURE Epilepsy’s CEO, Beth Lewin Dean, Selected for FasterCures LeadersLink Program
We are delighted to announce that our CEO, Beth Lewin Dean, has been selected to participate in the Milken Institute’s FasterCures LeadersLink program. This program offers the opportunity to work with peers at other nonprofit research organizations, mentors and experts, and a broad network of professionals across the entire biomedical ecosystem. This includes pharmaceutical developers, policymakers, regulators, payers, patient organizations, nonprofit organizations, providers, and researchers. This is an exciting resource for which CURE Epilepsy is grateful.
See the Epilepsy Awareness Campaign
You have likely heard that 1 in 26 people in the US will be impacted by epilepsy, but what does that really look like? CURE Epilepsy has partnered with the Danny Did Foundation, and the Epilepsy Foundation of Chicago to bring these numbers to life. By using highly recognizable venues in the Chicago market, this campaign demonstrates how many people 1 in 26 represents at a White Sox baseball game, a Bears football game, Navy Pier, or a Blackhawks hockey game. You can see this epilepsy awareness campaign across the Greater Chicago Area at CTA train stations and on our website.
Join Team CURE Epilepsy at the Chicago Triathlon
Looking to demonstrate your prowess in not just one, but three sports? What about raising money to support epilepsy research? Look no further. Help support CURE Epilepsy by participating in the 2022 LifeTime Chicago Triathlon on Saturday, August 27 – Sunday, August 28. No matter what distance you choose (international or sprint), we have secured 15 charity spots for individuals who want to swim, bike, and run for research through the most iconic spots in our hometown.
New from the Seizing Life® Podcast
A Post-Traumatic Epilepsy Journey: Diagnosis Acceptance Leads to Career Helping Others
Mark DeFee shares his years-long journey with post-traumatic epilepsy from his diagnosis following multiple concussions, through his years of denial in college, to his acceptance and efforts to manage his seizures.
A Remarkable Journey to Seizure Freedom Through the Ketogenic Diet
Jim Abrahams, creator of some of the biggest comedy films of all-time and founder of the Charlie Foundation, shares his son’s troubling and remarkable epilepsy journey to seizure freedom through the ketogenic diet.
Watch these and all of our upcoming Seizing Life episodes here.
New Item in the CURE Epilepsy Store
Our Nike women’s polos are now in stock! Get yours before they sell out, and check out our other items to show your CURE Epilepsy pride and help raise awareness about the need to find a cure for epilepsy.
Please mark your calendar for some key dates in the epilepsy community:
- June 1 – CURE Epilepsy’s 2022 Annual Event
- June 23 – International Dravet Syndrome Awareness Day
- August 1-31 – Seizure Dog Awareness Month
- October 19 – SUDEP Action Day
- November 1 – International LGS Awareness Day
- November 1-30 – Epilepsy Awareness Month
- December 1-7 – Infantile Spasms Awareness Week
1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.