Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, February 21, 2010

News Is Published Regarding The National ALS Registry

Unfortunately ALS marches to a much faster drummer than the registry development, but news was posted last week to give us an idea of the remaining project timeline.

The FAQs on that site are also helpful.

Engage Tomorrow's Scientists, Doctors, Senators, Physicians, Movers, Shakers

Please check out the Doodle 4 Google program here!

Can you imagine what a young person might wish to do? Cure ALS, play like Lou, make a parent well, invent a neuron transplant, produce a movie about people with ALS, raise $1 million for ALS, figure out what in the world causes ALS, save our military from ALS, design a better wheelchair, meet all of the NFL alumni with ALS, go to Washington for ALS Advocacy Day, keep 4 ALS alive on July 4,...

Can you imagine the awareness that an ALS-themed Doodle 4 Google winning entry would generate?

Please spread this information to young people and parents and schools. This is an opportunity to make a big difference.

Monday, February 15, 2010

Think Hard...

Do you know of someone who died from ALS many years ago? A neighbor, a coworker, a teacher, a grocer, a plumber?

If that person had served in the U.S. military (anytime, anyplace), his or her widow or widower is likely to qualify for VA Dependent and Indemnity Compensation (DIC).

It's quite possible that an elderly widow or widower struggling to get by is eligible for a monthly benefit and has no idea.

Military service plus a later (even much later) death due to ALS means that a surviving spouse qualifies for DIC.

It doesn't matter where or when the veteran served: it doesn't matter when the veteran died.

The VA can be reached at 1-800-827-1000. The Paralyzed Veterans of America can also be a big help in cutting through the red tape .

Please think hard and ask those widows or widowers if their spouses ever served in the military.

The opportunity to collect retroactive benefits has passed, but the continuing benefit is still available.

Friday, February 5, 2010

We Can All Be A Part Of Something Special For ALS In Washington

The ALS Association Florida Chapter's Piece-By-Piece display will be in Washington during the ALS advocacy days in May.

On Mothers' Day, Sunday, May 9, the display will be at the Navy Memorial. I understand that the Navy Memorial is on Pennsylvania Avenue, halfway between the White House and the U.S. Capitol. It is very visible and is directly across Pennsylvania Avenue from the National Archives.

Here is some background on the exhibit --

I had some quesions about the display and thought it would be good to share the answers I received from the ALSA Florida Chapter's folks here.
  • They are working hard trying to secure another public spot in Washington for the exhibit for Monday or Tuesday of that week. News will be posted on their website when available.

  • They can transport more mannequins, so if anyone would like to sponsor a mannequin honoring a loved one and expand the display in Washington, that is possible!

  • Their e-store has an inventory of t-shirts for any of you going to Washington who would like to help build awareness on the streets of DC with your wardrobe. Price is $15 each plus a modest shipping charge (so order a bunch).

Thanks to all who are making it possible for this edgy, professional, educational display to draw attention to ALS in in our nation's capital. We'll post more here as we learn more.

ALSA Advocacy Day information is available at

Be there or be square.

Tuesday, February 2, 2010

Dear Dwight Freeney,

Please, please, please give this concept some thought as the cameras of the world are on the Colts and your ankle this Superbowl Sunday.
Thank you.