Old 04-24-2013, 04:18 PM #1 (permalink)
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Default The ALS Association is pleased to extend the opportunity for ALSTUN

We will have a complimentary Exhibit Table.

"The ALS Association is pleased to extend the opportunity for ALSTUN to participate in The 2013 ALS Association Advocacy Day & Public Policy Conference Exhibitor’s Foyer.
This year’s single-day, Exhibitor’s Foyer Program will be presented Friday, May 10th from 9:00 am-6:00 pm. A six-foot, draped, complimentary Exhibit Table will be reserved for ALSTUN on the central exhibit floor."

Our intent is to have people help us advocate for several of the promising treatments that have been proven safe and effective. Unlike the HIV era and unlike Cancer victims no one is advocating and actively pushing the FDA and the drug companies for help now.
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Old 04-25-2013, 12:42 PM #2 (permalink)
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Default Re: The ALS Association is pleased to extend the opportunity for ALSTUN

Ed, here is the problem. And trust me, I don't like it at all. This disease moves so fast that even if we put up a stink I doubt anything would happen in our lifetimes. In turn, people don't want to waste the last few years of their life chasing something that will not benefit them. This turns into a viscous cycle and nothing ever gets done. Unfortunately, our fate is in the hands of the scientists. I honestly feel there is promise in the neer future for treating this disease. Unfortunately, it may not be soon enough for those of us living with it now. I hate the fact that a treatment is so close and my family will have to endure watching other people get treated for a disease that killed me. I know what your going to say, its people like you that make this the way it is. I'm sorry but I have better things to do. I am still young and have 11 & 13 year old boys that I need to spend time with while I can. It certainly is frustrating. I did offer to help your cause a couple times but you never returned my emails. I think a march on Washington needs to be put together. Like the Million Man March.
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