ALS Advocacy

ALS Advocacy
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.

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! http://tinyurl.com/yal533u

  • 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. http://tinyurl.com/az2gwk 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
https://ssl.capwiz.com/alsa/attachments/2010_Advocacy_Conference__web_version_.pdf

Be there or be square.

1 comment:

  1. I found this letter that came to my winter condo. What a difference a year makes;
    Dear Name:

    “Lou Gehrig’s Disease is stealing our loved ones piece by piece.” That’s a phrase that before long you’ll start hearing a lot; and, as two patients who have been struck by that disease, we can tell you personally that the phrase rings true. ALS, or Lou Gehrig’s Disease has stolen a lot from each of us - our ability to walk, to be active like we used to be, and even to speak with clarity to those we love. ALS is literally stealing us “piece by piece.”

    That phrase is the slogan of a new awareness campaign that The ALS Association Florida Chapter hopes to launch in January 2009. As part of the campaign, you will see billboards, television spots, exhibits, and even a new website (www.StealingPieces.org) all spreading the same message. The metaphor of a mannequin is used to illustrate that we, as ALS victims, are robbed ‘piece by piece’ of our ability to move. The imagery of the campaign is striking. Some have called it “shocking” or said that it “took their breath away.” We agree that the images portray the devastating truth about ALS and believe that this campaign is exactly what we, as ALS patients, need to grab the attention of the general public.

    We believe the commercials, billboards, exhibits, and website will deliver an unexpected message that will motivate those who may have known nothing about the disease to take action. While the images may at first appear disheartening to an ALS patient, this awareness campaign brings us great hope and optimism that a day will come when the general public fights ALS with the same intensity that they fight other, more publicized diseases.

    For years, the ALS community has hungered for tangible public awareness. The Piece by Piece Campaign could be the visual message that opens doors to the serious need for a cure. It targets a new generation of minds which has the potential to help end the suffering and shine a bright light on the darkness of the public ignorance about ALS. We believe this campaign has the power to bring increased awareness that will result in more resources for The ALS Association to fund patient services and research.

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