Saturday, April 24, 2010

At First I Thought I Saw A Red Wristband...

...on the microphone. Nah.

The Big Sondheim Award Gala

Would someone please get Ms. Lansbury a free Strike Out ALS wristband?

Friday, April 16, 2010

"Piece by Piece" ALS Awareness Travels to Washington, D.C.

After traveling over 7,000 miles to more than 20 locations, the Piece by Piece Awareness Campaign will now make its first trip outside of the Sunshine State! The powerful exhibit of 150 mannequins representing people who have been stolen “piece by piece” by ALS will appear in Washington D.C. for The ALS Association’s National ALS Advocacy Day and Public Policy Conference.

Hundreds of ALS patients, families, and advocates are making the trip to Washington for National ALS Advocacy Days. The Piece by Piece exhibit will complement their advocacy efforts, giving lawmakers a gripping image of the devastation caused by ALS.

You can get involved in this fantastic advocacy and awareness opportunity.
Click a button below to do your part.

Thursday, April 15, 2010

You Know We Will Have Arrived...

...when there are more pages on public policy than on restaurants.

In the meantime, here's interesting information on ALS Advocacy Day --

ALS Advocacy Day Rules Of The Road

Friday, April 9, 2010

Be Ready With The Waldo Defense

Are you going to ALSA Advocacy Day activities in Washington in May? You might want to print a copy of the article (link follows) from the Motley Fool and be ready to play a little "Where's Waldo" with a legislator (especially a difficult one who doesn't want government interfering with ALS).

It shows 42 future leading companies from a meeting of leading-edge biotechs. This is the private sector at its best, using emerging technologies to solve significant health problems.

Find someone working on ALS in that group.

So if you call on a legislator who says that ALS is not a problem that the federal government can or should pursue, simply hand him or her this article and say, "Where is ALS on this list?" It's there... once. It's like finding Waldo in a circus of priorities that seem more profitable (or perhaps easier) to the private sector.

I rest my case.

Wednesday, April 7, 2010

Why Not Take ALS As $eriously As Our Hoops?

Todd Lickliter was fired as Nebraska basketball coach after three seasons. The alumni and fans and students grew impatient after another losing season. They were willing to spend a huge sum of money in a struggling economy to send him on his way and terminate his contract. He did nothing illegal or immoral. He simply didn't win enough games.

According to Bloomberg, public colleges and universities have spent $79.5 million in severance payout money to send coaches packing in the last three years.

Those are just the public institutions in their study. They don't count the added millions that private universities have spent in the same pursuit of winning at sports (and I know one well that specializes in having one football coach for the price of three).

Compare $79.5 million dollars to what we have spent on ALS research.

Compare three years to the 141 we've spent in losing season after losing season trying to find the cause and cure for ALS.

Unfortunately the students in the ALS scenario don't survive to be alumni.

Is available?

Monday, April 5, 2010

Mothers' Day Is Never The Same After The ALS

ALS changes Mothers' Day. Brunches give way to meals that do not require travel, buffet lines, and the motor neurons that are required to eat successfully.

Millions of daughters and sons who have lost mothers to ALS would love to be able to send one more box of candy or one more vase of colorful flowers.

I offer a suggestion for those who miss those old brunches and flowers and family gatherings. Since things are never the same after the ALS, please consider a way of paying tribute to Mom and doing some good so that ALS might not ruin Mothers' Days for others. On May 9, Mothers' Day, the traveling Piece by Piece exhibit will be displayed in Washington, DC, directly on Pennsylvania Avenue, midway between the White House and the United States Capitol Building. Sponsoring a mannequin with your Mom's name will honor her and will help raise some national awareness and conscience about a disease that has devastated far too many families.

Your mother's tribute mannequin will then move to the shadow of the United States Capitol Building on Tuesday, May 11, when hundreds of ALS advocates will call on legislators to seek research funding. And it will go on and on as the display continues.

It's something that Mom might like to be a part of.

Please click here for more information.