Teens Speak Up!
Even the snow couldn’t stop Texas advocates from going to Capitol Hill to share stories about living with epilepsy. After a day and half of training, Teen Speak Up! participants and advocates put on purple scarves and headed to Capitol Hill for meetings with Senators and Representatives!
EFCST Teen Madison Breeden, Brownsville, met with Congressman Filemon Vela (D-TX-34) to tell her story of living with epilepsy. Congressman Vela has a staff member recently diagnosed with epilepsy, both the Congressman and the staffer had many questions about epilepsy. Congressman Vela was so impressed with Madison and her story, that he invited her to the House Floor to join him in a vote.
Speak Up and Speak Out! Congress needs to make epilepsy a higher priority.
The most prominent message delivered was the recent decrease in National Institute of Health funding. Less than ½ of 1% is spent on epilepsy research. The message of making epilepsy a higher priority resonated through Capitol Hill. Additionally advocates from across the country successfully delivered the message asking Congress to require the DEA to schedule new, FDA-approved medicines within 45 days. The day after Hill visits new legislation was introduced (‘Improving Regulatory Transparency for New Medical Therapies Act’’ H.R. 4299) information about this resolution is available online at http://bit.ly/HR-4299. All of the legislative messages delivered by advocates on Capitol Hill are also available online at http://bit.ly/epilepsymessage.
The Epilepsy Foundation has launched a White House petition asking for a lower DEA Schedule for marijuana for medical research. 100,000 signatures are needed by April 19 to receive an official response from the White House. You can help by signing the petition and helping to spread awareness of the petition. You can view and sign the petition at: http://bit.ly/epilepsywhitehouse. The Epilepsy Foundation’s Position and Commentary about Medical Marijuana is available online at http://bit.ly/cbdepilepsy.
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