Monday, December 7, 2009

A letter from the Epilepsy Foundation

I felt this was interesting and worth sharing...about the possible struggles we may deal with when Mercy comes home:

We’re ending 2009 with a bang thanks to more than 1,000 epilepsy advocates. In the last three weeks, advocates have sent 3,693 email messages to President Obama and members of Congress about the need to find a cure, protect access to care and end discrimination.

That’s a great start, but we can (and must) do better! First, we have to increase the volume of communications we generate about epilepsy. Each Representative in Congress receives approximately 10,000 email messages a week. To get noticed, we need to generate a lot more than 3,693 messages over a three-week period.

Second, we need to personally connect with Representative in Congress. That means sharing your personal story about living with epilepsy. Emails are easy to send, but easy to ignore. A handwritten letter or face-to-face meeting is hard to forget. The more personal your make your communication, the more effective you will be as an advocate.

How can you get more engaged? In 2010, the Epilepsy Foundation is planning two advocacy initiatives in which you can play an important role. Below is a brief description:

(1) Letter for a Cure – In early 2010, the Foundation will ask all Representatives in Congress to sign a letter. The letter will ask for a significant increase in funding for epilepsy research at the National Institutes of Health. Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy. By signing this letter, your Representative can show his/her support for a cure and better treatments for epilepsy. You can convince him/her to sign it.

(2) Year of Service – The Foundation is also planning a series of activities you can take to raise awareness and support for epilepsy in your community. The Year of Service will be launched at our Kids Speak Up! event in April, but anyone can participate. It will involve speaking with others in your community about epilepsy, meeting with elected officials and candidates, and rallying public support for our cause.

We will be in touch with more details about each of these activities. In the meantime, it’s not too late to add your voice to the debate. Please take a moment and email your Congressman, Senators and President Obama about epilepsy. It makes a difference and takes just a moment of your time. You can take action by visiting our online action center at

Of course, please contact me if I can be of any assistance to you. While I receive hundreds of responses to every message I send, I do my best to personally reply to every one of them. Many thanks for your ongoing support of the Foundation.


Joseph LaMountain

Director of Grassroots Advocacy

Epilepsy Foundation

Landover, MD

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