My turn for a quick rant

[Uncertainty]

Yeah, that response from Kennedy's office is obvious boilerplate. No doubt you'd get the same treatment from 99% of the congressmen or senators you'd write. Unless your issue is in the media in a big way, or you're giving megabucks to their campaign, it's just not an issue to them. :roll:

Which is why I think the general public isn't going to truly care about ALS until a famous person gets it AND speaks out about it in a persistent way. You need only look at examples like Christopher Reeve or Michael J. Fox to see how much it helps to have a truly committed celebrity spokesperson.

Unfortunately, with ALS, if anyone very famous DID get it, they'd likely be dead or incapacitated fairly quickly. The sole exception I can think of is Stephen Hawking, who's well-known and who's lived with ALS for over 45 years (amazing).

I don't know how active Hawking is in speaking out about ALS (don't recall hearing much from him on it, but that may just be me), but I'd imagine he'd be an amazing spokesperson if he ever focused his energies that way. Hawking in an ALS commercial would really be something....


Edit- Well, hush my mouth, Hawking actually DID do an ALS commercial! :

http://findarticles.com/p/articles/mi_kmafp/is_200705/ai_n19056364


And here it is... though I've never ever seen it on TV (I think this particular commercial was shown in Israel?). Might be a nice thing to link to on your site, Zen Archer:

YouTube- Stephen Hawking

...

 

[Steve100]

Seems 'Ted' is only interested in himself.

 

[hopingforcure]

someone made note of Augie's charity raising 175,000 on the 12th. And the lead singer of Five for Fighting John O. is a big ALS supporter.
On the Curt Shilling note, he even named his son Gehrig, he and his wife have been 2 of the biggest als supporters ever.
I think it is a shame that Ripken does not spend more time helping ALS, he really is not loud enough about the cause.. It is so frustrating...

 

[CindyM]

Steve- call the Senator's office and ask which die handles health issues. Then re-send your email to that person. THat person will take your request to the senator and together the staff and Senator will formulate a stance. If you want to make sure he takes your reguest seriously, let us know who the aide is who will be dealing with this issue and if a few other Massachusetts residents email the office, the issue will be given a higher priority.

In other words, this is one time when the squeaky wheel works.

Everybody is right, though. Senators and congresspeople do not usually handle their own emails. Their staff usually do that part. That's why it is a good idea to create "buzz" by having more htan one voter email the office.

 

[stevef]

ok i will call the office tomorrow and see who to talk to. Then I will let you know and you can email them also and see if we can find more people from massachusetts to do it

 

[ZenArcher]

That's my intent with the site. If those emails keep coming and from multiple constituents the staff will have it on their minds and it will get to the people that matter. I'm hoping the same holds true for the celeb talk shows and news programs. I'm in the process now of streamlining the email process. Its going much faster than I'd hoped but I've still got a lot to learn. If we can email on a monthly or perhaps every two week basis it will keep things in the forefront.

I've got a training class through Thursday but hopefully the nights in the hotel will give me time to hash some more of this out. In the meantime if anyone has letters that can be emailed by all for either General Awareness, Veterans Issues or to legislators please submit them using the Submit News link. Also get me email addresses to news programs, talk shows, etc. I haven't figured out how to automate others web forms yet so email address are better but if you've got a good one post it in the forum.

 

[juliesmile]

The fact of the matter is this is such a hopeless disease. We as people just aren't prepared to know what to say about something that is so totally fatal. At lease with Cancer and other "Bad things" there is something to fight, you can leave the conversation with well "Hang in there", "you can do this", "think positive". "A cure is just around the corner". I have found that people just don't have it in them to handle someone who is grappling with this disease. My husband isn't even diagnosed, and I fing people really don't know what to say to me. They are afraid I'm going to break down at any moment and they won't know how to handle it. So I find myself trying to make it easier for them by saying things like "Oh he's just fine. Nothing to worry about" when all I want to do is scream "Why!What will I do with out him? Don't you get it, he's going to die a horrible death, and NO, I'm not O.K.!"

I'm so thankful for support groups. You guys get it. We can't expect the rest of the world to understand. That's why alcoholics have AA, Addicts have NA, Gamblers have GA. There is just something about talking to someone who's been there.

I am so thankful for this site and all those responding to my issues with true compassion.

Julie

 

[stevef]

letter to king

I sent a letter to cnn so hopfully will here back but I doubt it. Not that autism is not important but they had something on it the other night and maybe they will do something for als. Everyone should go to CNN.com and email them to try and get things going

 

[ZenArcher]

Julie, ALS is a disease nothing more nothing less. Hope is a belief or personal choice. Don't confuse the two. ALS kills neurons, not hope.