My turn for a quick rant

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Stay tuned I'm trying to figure out how to make this work.
 
staying tuned

I read these posts out loud to my husband tonight. I am willing to help...or at least recruit some friends to help. They are always asking me how they can help.....so count me in.
 
I agree, I agree, I agree! On a positive note, on yesterday's local noon news, WGN TV in Chicago, there was a brief spot on Augie's latest fundraiser in Chicago. 175 K raised!
Linda
 
Count me in!

Hey, Jeff- I'd email a few folks! Cindy
 
count me in......

Jeff, which side of the bed did you wake up on today? LOL..... Don't get us started too early....
 
Who said I woke up?!?! Its a lie, a lie I tell ya!

I'm working on a way to make this as easy as possible. I've got some letters put together, at least short ones. Right now I'm working on instructions links and a delivery system.

For some reason this things next to me keeps ringing though and slowing me down.
 
I hear ya, Jeff. I'm so tired of all the celebrity "news," and I keep hoping that it will fade away.

There are so many diseases that need attention, and motor neuron disease is at the top of my list. One problem is that the survival rate is so short for most people that there is a high "turnover" in the ALS population. So it seems to me that the strategy for ALS publicity should take this into account. I would love to see a high-profile documentary that focuses on the progression of the disease and really shows people what happens. My mom would never agree to something like that, so I can't offer to do it, though.

This is a good place to develop some ideas, and I hope others will come up with some suggestions. I'd be glad to help out.
 
Count Me In!

Sorry - I have been comprimised with time lately and when I read the thread - all I could do is agree agree agree! I have submitted my friend's story to a local news channel who does a "someone you should know" feature regarding my friend's dedication to education despite this devastating disease - actually is on the stories of hope as a thread - then I found this -OMG! I posted this on the stories of hope b/c I have not heard from our local tv staation at all and I feel so bad - My friend is so dedicated as many of you and your pals - so I am greatly disturbed at the lack of compassion and concern for the people who endure this pain and suffering. I will do any thing to help!
 
Ok, I spent yesterday trying to get some things together. What I ended up with is a very rough beginning and can be found here:

http://www.advocate4ALS.org

The website will be dedicated solely to advocacy. I need ideas in terms of ways to make the site easier, content for articles and letters and contacts. Take a look at let me know.

Note that if you register you will be sent an email with a validation link. This link must be followed to complete registration.
 
Website looks great Jeff! Count me and my PALS in!

I find that even when you explain ALS to people you still get the deer in the headlights look! LOL It goes back to "it can't happen to me" syndrome. That's why I think a really graphic look into the process of this disease needs to be put into people's faces. Not for sympathy, but for more attention to research $$$ and a cure. And for more rights for people in a PALS situation. There are too many obstacles that vary from state to state and by the time these are negotiated, you've wasted precious time that PALS don't have!

We are also trying to advocate in our corner of the world and would be happy to join you.
 
Hey!

If at first you dont succeed.....!
Just wanted to let you all know that I had success with getting my friend John Featured on a local news program - check out the post in "stories of hope" - "strength, hope & persistence" They plan to interview and do a story on him and his coragious fight against ALS while continuing his passion for educating kids!

WHOOOO HOOOO!

I am so Hppy this news program will take initiative to educate our extended community about ALS.

IBy the way, Jeff - nice Job with the advocacy site - just visited - and i will join soon -
 
Wow, Jeff. Nicely done and quickly, too.
 
Thank you. Its a start but nowhere near what I want. The only problem is there isn't anything out there like what I want so I'm just going to have to make it. In the meantime I can use everyone's help. If you've written letters in the past and can generalize them please submit them using the Submit News link. If you've got any artistic/web graphics ability please feel free to make a real logo. If you or someone you know has PHP or Ruby on Rails experience please get in touch with me.
 
Hey Zen, Pink is getting a divorce!

Front page everywhere! who is PinK? Still cant find a story on the Italian Research in any national newspaper!
 
Sad but true

I sent one of the letter that jeff wrote up on his web site and so far only heard back from on of my state senators and here was the responce

I want you to know how much I appreciate the fact that you took the time to write to me about your important issue. All too often, citizens of our country choose to be part of the "silent majority," in spite of the many issues of concern to them.\

It is primarily through correspondence such as yours that I am able to obtain the insights and understand the needs and priorities of my constituents and people throughout the country. I intend to do all I can to be an effective Senator in meeting the many challenges we face

It is my hope that we will be able to make progress on issues of special concern to you and so many other Americans, and I thank you again for your letter.


Sincerely,
Edward M. Kennedy


This is an absloute joke responce. Obviously this is not from Senator Kennedy but from his office which I kinda figured it would, however they could ahve at least made the effort to make it seem like the read it. Not once in the responce is ALS metioned. Just metion special concern and important issue. It is like all letter like that get group into one special interest group at the office wihtout any concern for what it is.
 
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