Do not be ashamed because you have ALS, tell everyone who asks and they will likely say, “What is ALS”? The standard answer then is Lou Gehrig’s disease. You will likely get an “Oh yeah, I have heard of that”. I found this hard to do at first and likely you will as well. However, now when someone asks they should definitely get a chair as they are going to hear a speech from me.
Once again SUBMIT your name to the ALS Society in your area, let them know who you are and where you live. It is hard for the Societies to go to Government or even to private funding agencies if they do not know the correct numbers. I know it makes it sound like we are just so many numbers or statistics but numbers and statistics do help to get funds.
Support ALS Society sponsored events such as the Walk to D’Feet ALS program, golf tournaments, dances and any other events that may be happening. Even if you are unable to play or dance your presence will let people know the face and facts of ALS.
If you have the opportunity to speak to politicians, take it, and let them know of the plight of the ALS person, they might not be able to do much for you but you will have planted a seed and some day they will remember. There are not too many people I have met who have not known or heard of a friend’s friend that has had ALS.
The Walk to D’Feet ALS program, although still in its infancy, is making great strides in raising not only funds but also awareness. Too long has the media turned its back on ALS simply because they feel that the audience is not large enough to make it worth while to cover. We seem to get the filler pages in newspapers (if at all) and the last few seconds on radio and television when there is nothing else to cover.
With the Walks being held right across Canada on the same day people will have to sit up and take notice. I was in Sudbury, Ontario this year to see 400 – 500 turn out and raise $55,000.00. The one reporter that did cover the event was quite surprised to say the least; I honestly think that he was surprised to see over 50 or 60 people. As stated before, the number of people (not only the PALS but their families as well) that are affected by ALS is staggering.
Unfortunately, it takes someone who is well known to get ALS to bring the disease to the forefront. It was terrible when Catfish Hunter got ALS. But was it not just as terrible when Joe Blow down the block got ALS? I think it was and still is.
As you likely know I do the collection of March of Faces pictures and permissions for Canada. The other day I went through my list on the ALS Canada web site and added more information to each picture such as their lifespan and date of diagnosis. What I found was kind of shocking to me. We have collected 440 names and of that number there are only 157 who are still alive. So my question is, where are the other 2500 (?) and why are they not taking part in this very important awareness project? The short answer likely comes back to the fact that many of them are not registered with their ALS Societies and therefore largely unknown.
I know that the March of Faces Banners do work… and I have seen them at work. If there is a Banner hung up at a Walk or a function there are always people looking at them and just shaking their heads in disbelief as they read the statistics. Some are in tears.
The pictures gathered for the Banners go much beyond just the Banners. These pictures are gathered, and permissions granted, to be used for any legitimate awareness purpose. I have seen the pictures on posters for everything from a golf tournament to the inside of city buses… and the faces look back at you and beg to be remembered.
Perhaps the use of the computer has had some effect on the way people approach ALS now, I don’t know. I do suspect, and this is just my thought from watching the number of hits on my own website, that people are turning to the computer for information rather than their Societies. Once again “sorry to break your bubble”, but when you need a loan from their equipment pools you will sit for a good number of days in front of your computer trying to find one elsewhere.
There is no doubt that the computer has been a boon for ALS, I can remember (and this is my friend Marvin Streich''s favourite analogy) a few years ago when you typed in "ALS" into a search-engine you would find "Al's Garage" and not much else. Not any more!
So I would like to see more names on our banners.....and there are other little things that you can do to raise awareness, but little message about ALS on your e-mails, or make labels with the ALS logo on them for your return address on envelopes. Buy Georges jewelry (no, I'm just joking that one)!! But there are many ways to get the logo "out there" to let people know that you either have ALS or that you do support the cause.
Support the web sites that have good information on them, share these sites with others, and let the people who are doing the sites know that you appreciate their work.
We HAVE to work together to get this done and no one person will be able to do it. If you know someone with ALS please encourage them to take part by registering with an ALS Society or take part in the March of Faces Banners, preferably both, as they do go hand in hand.
Always remember that ALS is not a disease to be ashamed of, you never asked for it and how you got picked is anyone’s guess.
I hope this has given you some insight into the way that I think things should be done. They are, however, only my opinions for what they are worth. I have seen a lot accomplished in research over the past few years and things look very promising to me, maybe not for a complete cure, but at least for a way of treatment or even some reversal of ALS. All we can do now is try to do our best to raise awareness in seeking the funds that are required to keep this research alive and working.
I think that together we can do this.
It is our only hope.
George
"The death of fear is in doing what you fear to do." Sequichie Comingdeer
MGM
© ALS Independence 2003-11