Greetings CURE Epilepsy community,
We at CURE Epilepsy have an audacious goal: to live in a world without epilepsy. With approximately 3.4 million people in the United States and 65 million people worldwide living with epilepsy, it is critical that our community continues to raise awareness and bring attention to the need for better understanding, improved diagnosis and treatment, and increased research in order to find cures for all of those affected.
With this in mind, I invite you to join CURE Epilepsy and people from 130 countries around the world on February 8 for International Epilepsy Day. On this day people around the globe join together to raise awareness of epilepsy and speak with one global voice about the need to fund research that will lead us to a cure.
As part of CURE Epilepsy’s celebration of International Epilepsy Day, I want to share with you some of our activity as we look more broadly at our global epilepsy community. Recent studies have shown that too often communities and people of color face major hurdles when it comes to epilepsy diagnosis, treatment, and healthcare access. We will be presenting a webinar on February 8 that will discuss disparities in epilepsy care specifically in sub-Saharan Africa, and what is needed to make sure all the 65 million people with epilepsy worldwide get the care they need.
Additionally, we have recently announced a strategic working relationship with Epilepsy Canada to accelerate the pace of research toward a cure for epilepsy. This partnership will further both organizations’ ability to drive science and research to find a cure for epilepsy through more efficiently and strategically targeting their financial resources to drive progress.
In this CURE Epilepsy update, please find information on:
- International Epilepsy Day is Feb. 8
- International Disparities in Epilepsy Care: Social & Economic Effects of Epilepsy in Sub-Saharan Africa
- Welcome to New Board Members Kimberly Borden and Brian Gorczynski
- International League Against Epilepsy (ILAE) Sponsored Survey
- Education Enrichment Fund Applications Due April 15
- What’s New from the Seizing Life® podcast
International Epilepsy Day is Feb. 8
This year, February 8 is International Epilepsy Day. Celebrate the 65 million people worldwide affected by epilepsy by providing information about epilepsy, sharing your story, taking a selfie, donating to find a cure—or something else meaningful to you. Use the hashtag #EpilepsyDay on social media to add your voice to the international community of people affected by epilepsy.
International Disparities in Epilepsy Care: Social & Economic Effects of Epilepsy in Sub-Saharan Africa
February 8, 2021
11 AM CST
On Monday, February 8, in support of international Epilepsy Day, join us for a webinar to learn about complex challenges to epilepsy care in sub-Saharan Africa. Seizure disorders in Africa are associated with a high risk of early death from seizure-related injuries and status epilepticus. In addition, the epilepsy treatment gap, meaning the number of people with a chronic, active seizure disorder who are not on treatment, is 50-90+% in most African communities.
Welcome to New Board Members Kimberly Borden, MBA and Brian Gorczynski
Please join us in welcoming two new members of CURE Epilepsy’s Board of Directors.
Kimberly Borden is a partner in the Chicago office of McKinsey and Company. Kimberly is deeply devoted to advancing diversity, inclusion and equity and she volunteers for the Lupus Foundation. Kimberly has had epilepsy since she was 10, which has helped her understand just how devastating and disruptive living with epilepsy can truly be. Read More.
Brian Gorczynski is a Managing Member of Transcend Wealth Collective, an investment advisory firm. Brian and his family are New Jersey Ambassadors for the March of Dimes prematurity campaign, and Brian previously served as a director of the March of Dimes New Jersey board. His daughter Mia has epilepsy, and Brian is committed to advancing epilepsy research with the hope that it will improve the quality of life for Mia and for all people with epilepsy. Read more.
International League Against Epilepsy (ILAE) Sponsored Survey
Over 50% of patients who start having seizures during childhood will continue to have them as adults. Dr. Danielle Andrade from the UHN Toronto Western Hospital is leading a global ILAE Task Force to understand the transition from childhood to adult epilepsy care as well as adults who have already transitioned. To learn more about this study and the opportunity to participate please watch this video. You can also learn more by contacting Dr. Andrade and her team via:
Education Enrichment Fund Applications Due April 15
Become an agent of change for the epilepsy community! The Education Enrichment Fund is accepting applications through April 15. This program is a one-time scholarship (up to $5,000) for those living with epilepsy, family members, or caregivers. These scholarships support coursework in scholars’ chosen fields, so they can use their knowledge and skills to make a difference for the epilepsy community. Apply now!
New from Seizing Life, A CURE Epilepsy Podcast
Catch up on the latest episodes of our Seizing Life podcast. Listen as we share:
- The importance of clinical trial participation, from finding trials, to understanding protocols, requirements, and legal rights, to setting expectations and receiving results. Watch or listen
- The patient perspective of participating in clinical trials from a mother with two children living with epilepsy who has participated in two clinical trials. Watch or listen