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Highlights from the Hill Aprl 28, 2016

Advocates Speak Up for Epilepsy Community on Capitol Hill

TSU 2016 Group Shot

Nearly 200 teens, parents, affiliates, and volunteers gathered for the Epilepsy Foundation’s annual Public Policy Institute and Teens Speak Up! (PPI/TSU) conference held April 17-19.

Representatives from 33 states and 36 affiliates participated in a day and a half of advocacy training that culminated with an awesome sunny Hill day on April 19. Conference attendees learned about the importance of raising awareness about the challenges of living with epilepsy with their elected officials and heard from experts about our policy priorities. Teens and their families, and affiliate staff and volunteers shared their personal stories and spoke up for the epilepsy community through more than 220 Congressional visits. TSU participants also made a year-long commitment to the Year of Service campaign, which calls on them to be advocates for epilepsy in their communities. Interested in participating in the Year of Service? Learn more at http://bit.ly/EFYOS.

While on Capitol Hill our advocates spoke with their Representatives and Senators and their staff about funding for epilepsy at the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), removing federal barriers to cannabis research, creating a system to gather additional data regarding neurological conditions to help further research, and preserving the six protected classes policy in Medicare Part D so that beneficiaries living with epilepsy who rely on this program can have meaningful access to epilepsy medications.

Thank you to all of our advocates who attended the conference and shared their story to help move forward policies that will benefit the epilepsy community. If you want to learn more about our advocacy work, go to www.epilepsy.com/advocacy.


Patient Groups Urge DEA to Lift Barriers to Cannabis Research

Yesterday, April 27, 14 organizations representing Americans living with chronic and rare health conditions joined the Epilepsy Foundation in a letter to the Drug Enforcement Administration (DEA) expressing our support for removing federal barriers to cannabis research.

Moving cannabis from Schedule I in the Controlled Substances Act (CSA) would pave the way for greater research and new treatments. Currently it is difficult for scientists and researchers to organize clinical trials involving cannabis because it is a Schedule I substance and only the National Institute for Drug Abuse (NIDA) can cultivate cannabis for medical research.  There are also additional costs and infrastructure requirements due to the Schedule I status that can limit innovation and investment in medical benefit research.

To read the full letter and press release, go to www.epilepsy.com/cannabis