The Epilepsy Leadership Council (ELC) (formerly Vision 20-20) is a coalition of professional, governmental, and non-profit organizations representing patients with epilepsy and their families. The mission is to serve as a mechanism through which organizations can work on shared goals and projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas where working together produces greater efficiency and impact than working independently.
Hope for HH joined the ELC 7 years ago to partner with other organizations whose mission is raise global awareness about epilepsy, seizures and SUDEP. Hope for HH is an ELC member and also serves on the Board as one of 6 Syndrome Specific Patient Advocacy Organizations. The ELC meets annually at AES to share individual organizational progress and challenges and discuss joint initiatives. The focus for 2017 will be education, research and advocacy. Stay tuned for more campaigns as they arise out of this collaboration.
During AES, ELC members are also invited to participate in the following activities. Each activity has the goal of increasing public and professional awareness of HH and connecting with medical professionals.
- staff booths to raise awareness of epilepsy syndromes – HH staffed a booth for 3 days and interacted with many doctors and other health professionals
- this year the Hoyer Lecture was on the topic of SUDEP – titled “The SUDEP Movement: From Inception to the Goal” This is one of the premiere lectures during AES and open to the public. Slides for Hope for HH (AES2016 (ELC) Hoyer Lecture - HopeforHH 2016-1) and other ELC members were flashed to the audience of 5000 professionals
- participate in the Informal Learning Center where Dr. Helen Cross shared highlights from the 3rd International Symposium on HH
- Include a logo and digital flyer in the AES bag that gets disseminated to all guests – another great opportunity to spread the word and awareness about HH
HH is still frequently missed and misdiagnosed. Help Hope for HH educate medical professionals. Share our flyers with your local doctors and hospitals – especially if there is an Epilepsy Center of Excellence near your home.