Wednesday, May 20, 2009

Advocacy in action...

Anyone following this blog has probably figured out that I am passionate about advocacy on behalf of ALS patients and families! I truly believe it is imperative for us to gather as a community and raise our collective voices. We must be heard. Legislators at all levels of government must hear and understand the devestation ALS wreaks on individuals, families AND our communities.
2 weeks ago, 1000+ ALS patients, family members, friends and numerous professionals gathered in Washington, DC for the Annual ALS Conference and Advocacy Day on Capitol Hill. It is a powerful and exlihirating event. What I have learned however is that Advocacy is a year round job! As constituants, we must build relationships with our legislators. It is not easy, but it's not as tough as being an ALS patient!

For several months, I've been writing a quarterly newsletter discussing various topics relevant to California ALS patients, more specifically, how to use the tools that are currently available to reach and inform legislators and the media. The newsletter has been limited to advocates in Northern the natural progression is to move the newsletter to BLOG format!

Please check back regularly for news/tools you can use to bring ALS to the attention of your own elected officials. Use these tools to learn who represents you in Washington, in your state and in your local community. Get to know their staffers in the local office. Share your story. Help them understand ALS. Together....we can (and will!) make a difference.

No comments: