Greetings Epilepsy Community,
June is a month of celebrations. Summer is finally here, students have graduated high school and college, Pride Month is underway, and Juneteenth is just around the corner. At CURE Epilepsy we are proud to recognize and celebrate these events with our community. We believe that the world is a better place because of the diversity within it, and that diversity in all of its forms creates a stronger society.
The epilepsy community is lucky to have so many researchers, clinicians, and healthcare professionals who dedicate their lives to epilepsy research, treatment, and care from diverse and varied backgrounds. We know that the therapies and cures of tomorrow will be the result of the committed efforts of today’s researchers and scientists.
CURE Epilepsy is privileged to play a critical role in this incredible community, funding over 270 research grants to date as we search for understanding and cures. To do this, we rely on the generosity of our amazing donors and champions. Last week, we raised over $1.9 million at our 2022 Annual Chicago Benefit. This $1.9 million will go to funding the innovative research grants that we will fund in 2022 to advance and accelerate our mission to find a cure for epilepsy.
Speaking of epilepsy research, we are delighted to share our latest CURE Epilepsy Discovery which highlights research conducted by Dr. Nuria Lacuey who hopes to use the valuable results to develop a device that will stimulate critical areas of the brain following seizures to enhance breathing and avoid its cessation, thereby preventing SUDEP (Sudden Unexpected Death in Epilepsy). As SUDEP is one of the most devastating results of epilepsy, it is inspiring to see the progress we are making in understanding the biological mechanisms that occur so that we can ultimately prevent it. Each day, we are one day closer to a cure.
Through research there is hope.
In this CURE Epilepsy Update, please find information on:
- We Raised Over $1.9 Million for Epilepsy Research at CURE Epilepsy’s 2022 Annual Chicago Benefit
- CURE Epilepsy Welcomes Two New Board Members
- CURE Epilepsy Discovery: Identifying Human Brain Regions that Regulate Breathing as Eventual Targets for Direct SUDEP Intervention
- Register Now for Our Free Webinar: Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research
- Read the Latest Impacts in Our Researching to CURE Epilepsy Spring 2022 Report
- Slots are Filling Up! Sign Up Today to Join Team CURE Epilepsy at the LifeTime Chicago Triathlon
- New from the Seizing Life® Podcast
- CURE Epilepsy Store
- Key Dates on the Epilepsy Community Calendar
We Raised Over $1.9 Million for Epilepsy Research at CURE Epilepsy’s 2022 Annual Chicago Benefit
Thanks to the generous and committed members of our CURE Epilepsy community, we raised over $1.9 million for epilepsy research at our Annual Chicago Benefit last week. It was an incredible evening celebrating inspiring stories from the community and promising advancements in research since we last gathered together in 2019. Thank you again to our Host Committee, sponsors, donors, and volunteers. If you would still like to make a donation to help us surpass our goal, you can visit the event’s donation page here.
CURE Epilepsy Welcomes Two New Board Members
Hannah Whitten was introduced to epilepsy by her brother Dylan, who lived with epilepsy from the age of two until he passed away in 2017 from Sudden Unexpected Death in Epilepsy (SUDEP). Hannah is passionate about finding a cure for epilepsy, so no other family needs to experience the loss hers has. Hannah plans on being involved in the fight against epilepsy for the rest of her life.
Steve Austin has been a supporter of CURE Epilepsy for many years, most recently serving on our Development and Marketing Communications Committee. Having lived with epilepsy since he was 12, he has a passion to help others living with this condition. Steve looks forward to serving on the CURE Epilepsy Board and continuing to support our mission to find a cure.
Learn more about Hannah, Steve, and other members of our Board on our website.
CURE Epilepsy Discovery: Identifying Human Brain Regions that Regulate Breathing as Eventual Targets for Direct SUDEP Intervention
We are thrilled to share that our latest CURE Epilepsy Discovery shows promise in being able to create a device that can prevent SUDEP (Sudden Unexpected Death in Epilepsy). Read about Dr. Nuria Lacuey and her team who sought to identify specific parts of the brain essential for regulating breathing, a fundamental function whose failure following a seizure is primarily responsible for Sudden Unexpected Death in Epilepsy (SUDEP).
Register Now for Our Free 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 parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. All presenters, including a physician and a parent/caregiver of a child diagnosed with a rare genetic epilepsy, will share ideas on how to discuss SUDEP with doctors and how to take steps to reduce the risk of SUDEP.
See the Latest Impacts in Our Researching to CURE Epilepsy Spring 2022 Report
In case you missed it when it was fresh off the press last month, check out our latest Researching to CURE Epilepsy Spring 2022 report! This issue has a special focus on SUDEP (Sudden Unexpected Death in Epilepsy) and highlights our many achievements in SUDEP research as well as inspiring stories from individuals in the epilepsy community, exciting research developments, and more.
Slots are Filling Up! Sign Up Today to Join Team CURE Epilepsy at the LifeTime 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! Sign up today and help support CURE Epilepsy by participating in the 2022 LifeTime Chicago Triathlon as part of Team CURE Epilepsy on Saturday, August 27 – Sunday, August 28. No matter what distance you are looking to complete (international or sprint), we have secured a limited number of charity spots for individuals who want to swim, bike, and run for research through the most iconic spots in our hometown.
What’s New from the Seizing Life® Podcast
Rare Epilepsy: Collaborating for Advocacy, Research, and Community
Yssa DeWoody of Ring14 USA and the Rare Epilepsy Network (REN) joins us to provide a primer on rare epilepsies. Yssa explains what rare epilepsies are and how they are diagnosed, potential treatments, and the particular challenges for those impacted. Yssa also recommends resources including organizations, support groups, and clinical trials within the rare epilepsy community.
Epilepsy Stories and the Research Making a Difference
In this special episode, we present short videos about three key areas of epilepsy research on which we focus: Post-Traumatic Epilepsy (PTE), Sudden Unexpected Death in Epilepsy (SUDEP), and Refractory (or Drug-Resistant) epilepsy. Each video tells the personal epilepsy story of a community member and offers information and insights from a CURE Epilepsy-funded researcher working in that area.
Watch these and all of our upcoming Seizing Life episodes here.
CURE Epilepsy Store
Show your CURE Epilepsy pride and help raise awareness about the need to find a cure for epilepsy with everyday items from our CURE Epilepsy Store. From water bottles and car magnets to clothing, we have something for everyone’s summer needs.
Please mark your calendar for the following key dates in the epilepsy community:
- June 23 – International Dravet Syndrome Awareness Day
- August 1-31 – Seizure Dog Awareness Month
- October 19 – SUDEP Action Day
- November 1 – International LGS (Lennox-Gastaut Syndrome) 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.