Sunday, December 26, 2010

Keep The Volley Alive, Please!

The front-page, Christmas Eve story in the Washington Post was beautiful.

It was a big-league feature in a big-league publication. How about some big-league letters to the editor from our ALS organizations?

Something along the lines of, "This is why we fight this insidious disease -- for Alan and Kathy and the tens of thousands of others who live every day with incredible courage and love."

Saturday, December 18, 2010

Can You Hear Me Now?

A survey just went up at

to give grass-roots people a chance to share their thoughts and ideas on ALS advocacy.

The survey will take about 15 minutes to complete. There is some very general demographic information followed by ten sets of issues from the recent ALSA advocacy listening tour. There is a final page with a few questions to get your vision for advocacy success in 2011, etc.

It seemed like a lot of people interested in advocacy had been omitted from the recent ALSA listening tour, so here's a chance to be heard.

Please speak up! Please invite others who have skin in this game. Summary results will be shared with ALSA, ALS TDI, and MDA advocacy departments.

Wednesday, December 8, 2010

Let's Urge Some Journalists
As the keynote speaker at Health Journalism 2008, Elizabeth Edwards urged journalists to make sure candidates told the truth about their health care plans and that journalists have the responsibility to “make the American voting public more informed.”
We realize that not everybody can be a keynote speaker at a large gathering of health journalists. Are our ALS organizations' communications people even attending? Are they even cultivating an understanding of the urgency of the ALS problem with those who love to write a good article?

Monday, December 6, 2010

Ove Glove, Chia Pet, Splint Glove 2

Here is living proof that people with ALS are clever and have more marbles than the rest of us put together...

Sunday, December 5, 2010