Old 03-14-2008, 08:49 AM #16 (permalink)
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Lorie Your so right i had a Neuro from MDA who was the same bad news .I got an invite from NIH to go to Bethesda and be in studies only i needed his signature on the App .He ripped it up said i dont think it will help .I said you had no right to do that ,he laughed and walked away .I wont go back to MDA anymore although the Gals at MDA office were sweeties he was a creep Geo
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Old 03-14-2008, 01:50 PM #17 (permalink)
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I totally support MDA and ALSA. They know how we feel about the doc. MDA has done a lot for Tim. I will continue to support them. At the same time I will continue to let them know how disappointed were with this doc. Maybe they can find another one. What really pisses me off is (excuse my language) they dont even provide any information to patients that can help them. Like MDA and ALSA and NORD.I had Tim set up with them my self.
I called (doc) and raised hell with them over it. I am sure it didn't do any good!

Lorie-On your side!
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Old 04-09-2008, 09:44 AM #18 (permalink)
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Angie with MDA of Alabama called me yesterday. She said that WJTC will be calling me to set up the interview with us. I told her it couldn't come at a better time. And I told her about myself. She went silent. I told her it was ok. I can't speak as an ALS patient because I do not have a DX yet and I am not set up with them. But I have a lot to offer.
I was communicating with MDA of Alabama long before we brought Tim home to Alabama. They helped me in so many ways. If you are not set up with your State's MDA. You really need to.

Angie said we will air on the Alabama MDA Telethon locally and probably the State in May. Remember May is ALS Awareness month. They will also air us through out the Month of May. She said she would notify me about the National Telethon in October.

Now I am going to contact our local News Paper and other Local Media outlets. Maybe more people will become more aware about ALS. I also have some other things up my sleeve. I will let you know if they work out.

Tim and I are ready. Bring it on.

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