Here are the ground rules. There is one empty seat on each bus.  Take your pick. Each bus will pick up five people today.  Five riders w...

They say that the bitterest words at final judgment will be, "I was hungry, and you formed a committee." Perhaps a fitting c...

A few months ago I was discussing ALS with some people far smarter than I.  A gentleman asked me a thoughtful question -- "What are the...

A gentleman with ALS who went by the online name "Happy Physicist" died yesterday.  HP taught us all much.  He was a scientist...

For years we have been told by our largest ALS organization that disease prevalence is the "gold standard" by which the public se...

What are the barriers between people with ALS and a treatment? That's an important question.  There are some answers that may be sur...

Dear _____, It's that Walk time of year.  As a participant in past Walks, we want you to be among the first to sign up and help us ra...

If the veil of secrecy is required, please explain that requirement to us. If the veil of secrecy is desired, please explain that to us,...

We think that the supporters of the CDC's ATSDR National Registry and our major ALS organizations deserve some candid and clear informat...

Around 10 million people have died from ALS/MND since Lou Gehrig's diagnosis in 1939. That's like the entire population of Belgium...

What percentage of the total patients in the Registry have been identified... Q1: Both by your passive data mining and by self-enrollment?...

http://en.wikipedia.org/wiki/Michael_Goldsmith Through the work of one wise and driven man with ALS, every major network and every major p...

@phrma asked us on twitter, " If you could propose one idea to help improve health care delivery in the United States, what would it ...

We're so good at walk-a-thons.  Let's get really good at idea-thons. The idea struck me during the consensus-building final portio...

Every team knows you have to keep score.  Every business knows you have to keep score. Ask the head of any ALS not-for-profit how last yea...

We need a shared, searchable, online source of ALS-related grant information that includes grantors, $, start dates, end dates, receiving ...

Here is a press release from yesterday -- http://online.wsj.com/article/PR-CO-20130621-906271.html?mod=wsj_share_twitter The ALS Associ...

[If you've not read the June 15 post, please give it a quick scan for some background first.] The national ALS registry concept was ...

Here is the text of the ALS Registry Act --  http://www.govtrack.us/congress/bills/110/s1382/text . I am one of many who worked long and ...

A few months ago when a man with ALS who posted online using the name "Persevering" died, Emma, the forum administrator at www.pat...

Today we remember and honor those who gave their lives to keep our nation safe. The thousands of cemetery flags speak volumes. There a...

Yesterday at the ALS Association's Advocacy Conference, Dr. Richard Bedlack presented on "ALS Facts and Myths."  I think highl...

We met absolutely no resistence to the ALSA priority requests for $10 million to continue the CDC's ALS Registry and for $10 million for...

The live streaming of the proceedings is a wonderful addition.  Quality was good and it is bringing in many people, including those with ALS...