Friday, August 25, 2006

The ALS Advocacy Community

I would like to introduce you to something completely different.

Over the past few weeks I've been involved with a group of PALS and caregivers attempting to make our communities and politicians more aware of ALS. I found myself getting excited about the fact that for the first time in a while, I'm turning my attention from an inward to an outward perspective.

Here's quote from a PALS named Chuck who lives in Florida who motivated me to get deeply involved in the ALS Advocacy effort:

'What is the nature and value of advocacy? What are our strengths and weaknesses as a community in addressing the broad and distributed issues that face us? Our community of PALS is by the very nature of where we are in solving the riddle of ALS, transient. Few of us stick around long enough to build a strong community to advocate. Our strength in advocacy seems to me, to be the few that are blessed with surviving beyond the short 3 - 5 year window, and more importantly is the CALS (caregiver of ALS) community that touches each of us PALS as we learn to live and die with this disease. As I look at many of those leading the community, I find many CALS, or family members whose lives have been altered by this disease touching their lives at a very basic and personal level. This is the community that needs to advocate on our behalf. Not many of us are around long enough to be effective advocates except in a fleeting way, while we are distracted with dealing with the realities of the disease.'

I have experienced first hand how my family and friends have immersed themselves in the task of providing support to me and my wife. Most of the time my caregivers are heads down focusing on daily caregiver chores. This is greatly appreciated.

But what happens when we are approached by newspaper reporters, TV journalists, etc. ? Like most people, I knew almost nothing about ALS when I was diagnosed. My PALS and I think the lack of knowledge is true for the public, including our government representatives at all levels.

Two days ago I had an excellent conversation with our Washington DC ALSA representative, Pat Wildman ( or 1-877-444-ALSA) and he emphasized to me the following:

'The most effective approach in our advocacy for increased funding has been and continues to be, to tell the ALS story - for people with ALS and their families to let Members of Congress know the true nature of the disease and how it robs a person of the ability to do the things - like hugging their children or their parents - that most people take for granted. That ALS is a family disease; that it can strike anyone at any age; that it is fatal; and that it has no cure or effective treatment. And we need to keep delivering these messages every single day until we can prevent, treat and cure this horrific disease.'

I think all PALS should seek a one-on-one with their respective congressman and possibly their Senators. But go to the meeting with a plan. Do you remember the old 'how to move up in the world' rule that said everyone should have a prepared one minute 'elevator' speech just in case you have that once in a lifetime chance to ride in the elevator with the president or CEO of the company you presently are working for? You don't want to waste time with small talk. You need to make a lasting impression. I'm hoping you have heard of this technique. Well we PALS and CALS need a similar speech. If we are approached by friends, newspaper reporters, TV or magazine journalists, how do we maximize our moment of fame in the name of ALS Advocacy? We should have our 'canned' elevator speech we can lay on the media as well as the politicians. Perhaps this is a way to strengthen our advocacy efforts.

Come join me!

Here are two media clips that will assist you in the cause: