Dup15q Alliance is writing a letter of support to the NIH and providing feedback for the Curing Epilepsy: Focus on the Future research benchmarks.
Here is how you can help!
Urgent Call for Patient, Clinician & Researcher Inputs to Curing the Epilepsies
Twenty years ago (March 2000), the White House initiated a conference called Curing Epilepsy: Focus on the Future to develop research goals (benchmarks) to cure epilepsy. Since then, epilepsy thought leaders have come together every seven years (in 2007 & 2013) to measure our progress against the goals and set new priorities toward curing this disease that impacts 1 in 26 people. Epilepsy leaders will again gather in January 2021 to:
- Set new benchmarks and
- Explore big and transformative ideas toward cure and making lives better for everyone touched by the epilepsies.
To gather ideas and create a conversation, the AES Epilepsy Benchmark Stewards Committee in collaboration with the National Institute of Neurological Diseases and Stroke (NINDS) has launched a crowdsourcing tool called Ideascale where everyone from the person living with epilepsy as well as top doctors can all share their challenges and visions for change.
Are YOU a Patient? Caregiver? Clinician? Researcher?
The nation’s leaders want to hear from YOU about what is going well and what is not working. You don’t need to be an expert to add your voice to this critical conversation or “like” the ideas of others.
The “benchmark feedback” and “new idea” campaigns both end on Oct. 30, 020. Comment on one or both! Time is of the essence.
1. Sign up here and start adding your stories, photos and ideas or like the ideas of others. Need help? Step by step instructions are here. Watch a how to video here. Alternatively, you can submit your comments via email to NINDSIdeaScaleSupport@mail.nih.gov.