My turn for a quick rant

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ZenArcher

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You know what pisses me off? If I ask 50 people on the street what ALS is I'd probably get 5 that could tell me what it stands for or know Lou Gehrig's. Out of those maybe 2 that actually know something about the disease. That isn't the problem that is part of our job now; to educate.

What is the problem is that for the last year I've been writing to TV shows and news programs, etc trying to get air time for ALS to no avail. Yet what Earth shattering news do I see this morning on Good Morning America; Miley Cyrus didn't wear a seatbelt and the facts around seatbelt related deaths followed closely by the fact that Aretha Franklin is upset because Beyonce called Tina Turner the "Queen of Soul". For some reason it touched a nerve this morning so me being me; I go to the GMA web page to explain my ire. Well that only made things worse because they are kind enough to give me 500 characters to do so. So now I have about 4 - 5 sentences to explain myself. That just made me angrier. Well I managed to get the point across without too much venom and in 496 characters.

What is it that we need to do to get the slightest acknowledgment from the news/talk shows? I mean we have stories that will make you cry, stories that will make you laugh, people that have shown more courage and strength than any Survivor winner, we have controversy, hope and humanity. What is it exactly that we're missing that we can't even get a 5 minute spot on the local news.

Ok, now I feel better although as I was typing this they had another important story about a $1.8 million dress that weighed so much they had to do the photo shoot in short intervals. Oh well the fight continues; It is better to die fighting than live fleeing.
 

Jeliota

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You know, I really think there needs to be a non-profit that concentrates on fund-raising and awareness raising. The ALSA does a good job with what it does, but as someone on the outside who has tried repeatedly to offer assistance, I can tell you that at least the TN chapter is very frustrating and unresponsive to offers of help. It took them months of harassment to even get me a volunteer form. The entirety of their public involvement is the annual walk.

We need an organization that shows the same kind of determination and fight that the Susan G. Komen Breast Cancer Foundation shows. I can't walk out my front door without getting hit in the head with a pink ribbon, and it seems like there's a new event every week.
 

stevef

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I hate to say it

I hate to say it Jeff but unfortunatly that is today's society. I also hate to say it but it seems people are not to worried about something like ALS unless it effects them or someone they know in a personal way. It does not get the press like something like say Parkinson's get becuase Parkinson's has a high profiled person Micheal J. Fox who has it or say MS where so many more people are effected compared to ALS. Big drug companies do not want to invest there time into a disease that the numbers do not mean a huge profit to them. You never want to see someone come down with a disease but unfortunatly it seems that is what it takes is a high profiled person to get something for the country to care.
 

ZenArcher

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Jeliota, I won't argue...too much :). I have to defend the ALS Association at least a little because of some of the things I've learned. I can't speak to the TN chapter but I can speak for the Greater Philadelphia and National Chapters. As far as the Greater Philadelphia chapter goes they provide clinic for over 800 ALS patients covering the eastern half of Pennsylvania, southern New Jersey and all of Delaware. The clinics take no money out of pocket from patients, they do expect insurance to pay but not the patient. They have to loan closet, respite care, caregiver days, etc. Monday I was in the state capitol for ALS Awareness day and learned that they did all of this without state backed funding. For that I applaud them. The National chapter has been responsible for the automatic qualification for SSI and Medicare as well as the ALS Registry as far as its gotten. Do we need more absolutely but they have done quite a bit for us. There is more happening on the information front as well. Angela Landsbury has done some appearances which will be released shortly. You can see it here but it won't play yet: http://www.youtube.com/user/alsassociation

I agree we need more but we need to help as well. As I said above there are 800 PALS served by the Greater Philadelphia Chapter. Take a guess at how many were at ALS Awareness Day...3. There are 30,000 PALS in the U.S. but how many went to D.C. last year...900. I'm not trying to shame anyone or place blame or anything other than state simple facts.

If you are still having problems volunteering let me know and I'll get you in contact with some of the people at the National Chapter. They'll find a way to use you :)


Steve, we are today's society at least a part of it. We need to let the media know our desires or they'll follow market research. Can we change them probably not but if we can get a 5 minute spot that's 5 minutes more than we had before.

Not to wax to philosophical but, "No man is an island, entire of itself...any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee." Ignorance may be bliss but it is a bliss that can very quickly shatter around you. We need to make people care for our sake, for the sake of those before us and for the sake of those to come.

I guess I should have prefaced this whole post with "In my opinion". Have you guys noticed yet, I have one or two of them :mrgreen:
 

Icanmanz

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Jeff, I agree with you 100%. Just like yesterday, it was Roger Clemens Day. Who cares whether he was injected steroids or not! They are all a bunch of lying clowns! How many times have you seen them talking about our Pals hour after hour, after hour? I got fed up with that mess on TV yesterday. Just like our DA here in Houston, Chuck Rosenthal, he is in hot water, and he has been getting so much attention! As if we care because he sent romantic emails to his mistress! This is so messed up!

Irma

Sorry folks, didn't mean to get off topic! Just letting off some steam!
 

Jeliota

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ZenArcher, you are absolutely right (I bet you're relieved to get my stamp of approval :-D)

I just think it would be nice to have an organization that concentrates on the other things, like constantly being in front of the publics' noses, raising money to raise more money (for research, hammering home the message, for donating to ALSA, ALS TDI, etc.) and just generally being bothersome.

From an outsider's perspective, it seems it would be hard to expect much more participation from a patient group with a disease that is this devastating emotionally and moves so quickly to severe disability. With something like cancer, you have survivors to carry the flame. My wife, for instance, almost died from a pulmonary embolism and now sits on the board of directors for the Vascular Disease Foundation (which mostly targets hospital staff). The embolism was three years and eight months ago. If it had been ALS instead of a PE, would she be in any condition now to participate as she does? Maybe, but who knows? Plus, once she was over the PE, she was over it. It took about 3 months and then she was back to normal and able to pursue this with a passion without physical limitations and costly ongoing expenses.

Okay, now I'm just rambling. But, yes, the ALSA is definitely doing what they do very well. I would just like to see a greater focus on marketing.

Paul
 

Jamiet

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You know what bothered me........this article, which is published in a major medical journal on lithium....claims to possibly stop ALS in its tracks, they publish it and it doesn't even make the front page...!

Jeff, i'm with you....i'm mad at the world for this crap....Irma is spot on...why don't they leave roger clemens alone, i bet 50% of us here has smoked a joint at some time or another.......yes, i'm guilty....not ashame of it, but i grew up......people make mistakes...the more that they talk about it. the more it gets published..the more kids will be shooting up steroids to throw a baseball like roger clemens...
 

ZenArcher

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You know the one point about the whole steroids in baseball thing that I just don't get is why are the hearings being held by Congress? I guess this takes precedence over things like oh I don't know, the ALS Registry, an exit strategy, the economy or pick another couple thousands things that ACTUALLY MATTER :evil:

If you don't want steroids in sports make them a controlled substance.......oh wait, they are. Alright then make it illegal to use that substance without a prescription......oh wait, it is. Then institute random drug testing.....oh yeah, they do.

If they pop positive on a drug test kick 'em to the curb. If not then there is this saying I've heard a couple times, "Innocent until proven guilty". Apparently that's far to simple, instead we have to have a congressional hearing for a hearsay accusation.

See you guys are stirring me up again. There is a letter forming in my mind already. First I've got to write to the View to see if I can get Joy Behar to ask Elizabeth why McCain as a former POW won't support the ALS Registry act when studies show that vets are twice as likely to develop ALS. That should stir up some fun if it happens :twisted:

**cue evil laugh in the background**

MUAHAHAHA MUAHAHAHA MUAHAHAHA
 

joe stockton

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Rant Away!

Hi Zen,

I'm going to repeat why I believe there was such a strong research push for ALS in Italy. Major Italian Soccer stars were developing ALS. For Italy this is similar to when Magic Johnson announced he had HIV. I remember how all of a sudden HIV funding proposals roared through the halls of Congress.. This is big news in Italy, tv, newspaper and radio. Thank God we have the internet ...it is a very powerful tool...compare the NY Times stock price to Googles stock price...exactly! million more eyeballs on the web today. ALS has a voice!

To answer the Mylie Cyrus issue, I think Ben Stein hit the nail on the head.

http://www.benstein.com/121805xmas.html

All the best, Joe
 

Al

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OK Jamiet. I admit it. I did smoke a joint once, but I didn't inhale. I'm cheesed off too. I have not seen one bit of news in the mainstream media about the Lithium project here in Canada. Sad. At least they are going to be doing a cross Canada drug trial here.
AL.
 

CindyM

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I agree that our national priorities are screwed up, at least here in the states. I've never been interested in, for example, a stain on a White House intern's dress, or what Anna Nicole's baby is doing for her first birthday. THere are other more important issues to consider.

I don't care if there is "only" a few families affected with ALS. We need more awareness, more research, more $. JMO Cindy
 

stevef

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Curt Schilling

Curt Schilling is trying to raise issues about ALS. He has what is called Curt's pitch for ALS. unfortunatly his biggest fund raiser will take a hit this year since he will nto be pitching as much and you have in the past been able to donate based of his strikeouts each year. Maybe he can find another pitcher on the team to take over like Beckett who is lights out. Olny if more guys like Curt got involved it make bring it to attention
 

ZenArcher

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Jamiet & Al, let me just say that my roommate in college was a subscriber to High Times and I'll leave it at that.

Joe, only problem is I have two daughters 12 and 14 I more than know who Miley Cyrus is I almost know all the words to her songs :oops:

Cindy, I have to confess I paid attention to the stain :-D

**WARNING CONVOLUTED THOUGHT PROCESS AHEAD: APPROACH WITH CAUTION**

As I was writing this the question that flashed through my mind was how do we fix it? The first thing that came to mind was emailing everyone which is what I do. This was followed shortly by the realization that a lot of people don't like composing letters or emails for this kind of stuff. Well what if we used a common letter? Yeah but then its hard for people to get it to everyone. But the ALS Association website has a page to do that.

**ADHD MOMENT COMPLETED**

So here's a what if. If a letter was pre-written so that all you needed to do was cut and past the text into a web form, granted probably a couple times to get everybody, would you <tap><tap> Yeah YOU be willing to participate in monthly email barrage of places like Oprah, CNN and whatever other national or local media outlets you choose and for U.S. residents the President and federal legislators?


Steve: Excellent point. Here's the website: http://38pitches.com/
 

Jamiet

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LOLOLL

HEY YALL....HAPPY VALENTINES DAY...


Hey all you guys...make sure you get the ole lady...(oops...the women ain't supposed to hear us say that...).....some flowers...if you can't get out...at least draw her one...and if you can't do that, just a kiss will work for the wife that loves all of us so dearly....

yes, mine is the best...sorry guys....you can't have her.... (Well, if you could afford her, maybe..)...OK...LOL...corny joke....and if she reads this....I'll be sleeping in the dog house tonight...

ZEN...you've got us all fired up, i'm ready to whip some arse....

Good day...

Rgds,

Jamie
 

rick/Wpg

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good ranting!

Hey all!
GOOD RANTING!
Zen - you really hit a nerve! My wife Joan and I are new to this...just got my diagnosed a couple weeks ago but have been on the forum a couple months now... ... have mobility and my mouth works great for now so we are getting involved in our area...everything from fundraising ideas to media coverage , etc.
The ALS society in our area is golden but they need $$$ and media help...can't believe the lack of coverage and awareness!

Anyhow...I find my ranting is best done later in the day cause then I can have a couple of "cold ones" to calm down :) Off to do that now!
Will be connecting for some of those ideas re the media... the more of us doing it the better!
Rant On!
Thanks!
Rick
 
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