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Theresa2004

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If anyone watched tonights episode, Mary Tyler Moore was interviewed regarding diabetes. She discussed some issues regarding legislation for stem cell research in the US which they expect George Bush to veto.
I must say her moral and ethical perspective was impressive; by using samples which would otherwise be destroyed.
I sent a comment about the show as anyone can via their website, just search for Larry King Live and it pops up. I complimented the content of the show, and the ability for the topics to reach the masses. From there I suggested a show on Lou Gehrig himself, and ALS. I don't know if the show is in hiatus during the summer, but my suggestion to anyone on this forum is to write in, even if you didn't watch the show, and encourage his team to research and dedicate a segment to it. It reaches the masses around the world. Can you imagine the awareness it could create?
 

Carol Deboer

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Hi Theresa,

I agree with you 200%. I will email the show and also request a segment dedicated to and about ALS. Definitely will not hurt to try or to ask. I also think that the US media is the place to reach the masses too. Would be nice to see a bio on Lou himself. Now, if we can get everyone else to do the same thing, maybe we would see this request a reality. Lets try it.

Carol
 

Theresa2004

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Great, go for it. I think it could be an incredibly enlightening segment. We may be wasting our time, but a few minutes to send messages out, who knows what could happen.
I think he may have done a segment a long time ago, when the soap star, Michael Laslo, not sure the last name is correct, was let go from what ever show he was on due to inability to do his job. He didn't tell them he had ALS.
Come on everyone, write in, keep writing in, somewhere along the line, we will ignite the spark.
As I watched bits of Live 8 from Barrie and London, I imagined a concert, maybe not quite the magnitude of this, although it would be great, to be held in support of ALS. Any one know any rock stars?
Write in everyone.
Thanks Carol, for adding your part to it. Now, we have to real in the rest of them.
 

Timshelper

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This is just an awesome idea. Email here I come Larry King Live. Theresa I had the same idea tonight Tom Cochrane was in Barrie today and then our little city had him here tonight and it was unblievable all the people that were there. It was the biggest party and it brought people out that dont usually go places young,middle aged and old. I thought also wouldnt this be great if this was a benefit concert for ALS and as I enjoyed myself immensly I had this grin on my face thinking why cant this be possible to do for ALS. Its definitly a sure fire hit no matter where you are, just look around the world tonight and see how many people were out. Wouldnt it be great to have that many people and all the awareness and donations we could get for ALS. Unfortuantely I never was a groupie so I dont know any Rock Stars although I always wanted to. I still love long hair men with instruments and by the looks of it I'm not the only one. So I'm with Theresa if anyone has connections we need to do this and they could do the ALS Tour ( About Lou's Story). I know a little over the top huh, just asking? Have a great Sunday.
Kim
ALS About Loving Someone
 

Granny

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Great idea Theresa. Larry King reaches everyone!
Around Lou Gehrig's birthdate, Larry interviewed the ALS research doctor from California that contracted the disease himself. I missed that, but
The Score had a good piece on Lou and on two PALS around the same time.
I have a 12 year old grandson who is a BIG baseball fan, and my son used the words that Lou Gehrig used in his retirement speech when he was explaining to my grandson about my having ALS. Lou said "I am the luckiest man on the face of the earth". This really seemed to help my grandson come to terms with my illness.
Sorry, I don't know any rock stars either, but will e-mail Larry.
 

Theresa2004

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I wonder how long ago he did the show with the California doctor?
Interesting would have loved to see it. I am going to try to watch the Score tomorrow night, it is being repeated at 6:00 in Ontario on one of the specialty sports channels. If any one has Rogers cable, it is channel 53.
Keep writing in all.
 

Carol Deboer

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Hi Guys,

Sent a email to CNN Larry King Live and recieved a letter back from them. Basically they said they would take it to review and see if it was newsworthy or of general interest to the public and that they may contact me for further information is this story is picked up. Anyway, it was worth a try, and who knows, maybe it will get through to the media. If everyone sent a letter it would make it more vital that this message gets out to the masses. All we can do is wait. That is something that I am used to doing, unfortunately. It is always worth a shot to try to to do something worthwhile. Hopefully, we will see some results. Have a good night everyone, I am off to bed. Love you all.

Stay Strong, Carol
 

Theresa2004

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Thanks Carol for your help. At first when I drafted the proposal, I thought everyone would think I was dafted. I know the struggle our group, in coordination with two other regional walks, had with media attention. They worked their butts off to be heard. One huge newspaper who lost their own reward -winning reporter as he described his plight with ALS, and died last year, didn't give us an inch. I wrote as an independent citizen, an email to them expressing my disappointment as to their lack of coverage for the Toronto Walk especially since one of their own had succumbed to the disease. They didn't acknowledge me. One TV station covered the Toronto walk, but when the live news came on that night, they cut the interview with a charming ALS patient. They must have run out of time in their programming as previously in the broadcast, they devoted about 4 minutes to a dog show being held in Toronto, ALS got maybe a minute. I felt their priorites were a bit distorted and emailed them accordingly. They did reply, but could not explain why a bunch of dogs lounging on designer furniture and dressed in designer outfits got more air time then an event to raise money for a disease that effects thousands of humans. For those animal lovers and those with pets, please this is not a put down in any way. I just felt that the dogs got and did get more priority then a terminal illness, one so many people worked to make the event a success.
 

Granny

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Dear Theresa,
I can understand your frustration at the coverage of the topic of ALS. It sure doesn't seem to be a priority with many people.
On a positive note, to give credit where it is due, our local weekly paper did a full page story on my struggle with ALS the week of our ALS Walk, did a lead up the week before that telling about the walk and our need for sponsors, and the week following the walk had a story and several pictures of the walkers. I thought it was fantastic coverage. It has seemed to have a positive impact on people and made them aware of what the disease is and the need for research.
I don't want to downplay the lack of publicity about ALS, but did want to tell this positive story. We are a small city here in New Brunswick, so the story would not reach very far.
 

Theresa2004

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Thanks Granny that is wonderful you have had the support of the media. We have had some limited success with publications, but when we do, it appears so deep in the newspaper, one can easily miss it. It would not hurt some of our larger newspapers in Toronto to carry the message on occasion. They have no qualms about giving the Becel Heart Ride two full pages since over 12000 people participated and it closed down some major arteries on a Sunday afternoon. Fine, but give us some space too. All we can do is push and push and compliment those who have supported us.
If you go into the thread I created, The Score/To the Point, I will cut and paste what I wrote to them and their response.
If we take the time to say thankyou, hopefully they will be there for us when we need them too.
 

me

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I emailed Larry King today. I'll let you know if I get a response. Melissa
 

nanniecrg

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PALS
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la
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videos

How do I watch the videos? I have clicked on every link and cannot get a video to come up.:(
 

Al

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On
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Which videos are you trying to see? Some things are not available to brand new members.
AL.
 

CindyM

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Hey Al- are you still up? Did you not see the PM I sent you about taking lots of fluids and getting your rest? (You don't have to tell us what fluids you decided to take. My theory is, a cold requires liquids, LOL.)
 

Al

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On
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Actually trying to get caught up reading all the posts from the 7 days I wasn't on. I'm on antibotics so have been only drinking juice and water since Saturday. I can't remember the last time I didn't at least have 1 glass of red wine in that long. LOL. I didn't get up til noon so that's not bad. Daughter checked chest tonight and it's clear. She's an RN.
AL.
 
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