Old 05-08-2016, 06:47 PM #1 (permalink)
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Who is in town?
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Old 05-09-2016, 08:09 AM #2 (permalink)
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I am here! In the ballroom w/ bedlack right now ! Love ya chally
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Old 05-09-2016, 09:21 AM #3 (permalink)
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Matt and I are here!

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Old 05-09-2016, 04:06 PM #4 (permalink)
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Default Re: DC-Advocacy Day

I know this is the PALS subforum, but since this is the latest thread on Advocacy Day I figured I'd continue the conversation here.

The three "asks" for tomorrow--the three topics that ALSA believes we can make the most progress on--are:
- Dormant Therapies: providing incentives for drug companies to research using drugs created for other diseases that have been shelved because patents are expired.
- Preserving access to complex rehab technologies: CMS has proposed using competitive bid pricing to complex rehab power cheek hair connects such as head supports, seating systems, adjustable leg rests, etc.
- Waive the SSDI five month waiting period

It's going to be a grueling day, but we're ready!

Oh--Matt had another chair incident today. He moved the table during lunch about six inches. You should have seen the people on the other side of the table jump!! Never a dull moment...

Becky
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Old 05-09-2016, 05:24 PM #5 (permalink)
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Good work Matt - don't let people get into conference mode and just be there for a good chat and feed - he was keeping it real

The day coming does sound gruelling!
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Old 05-09-2016, 05:36 PM #6 (permalink)
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Oh Tillie, he's all in or sound asleep! LOL--he asked for a one hour nap before going down for dinner. It's hour two, and I'm good with room service!
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Old 05-09-2016, 05:54 PM #7 (permalink)
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I am so glad you all are there. Maybe next year I will make it. It always comes at a bad time for me. Please tell us all about when you have time and energy!
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Old 05-10-2016, 03:11 AM #8 (permalink)
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Ahhh room service is a wonderful thing!

Matt looks so sound asleep and relaxed, best to leave sleeping dogs lie ya know ...
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Old 05-10-2016, 05:52 AM #9 (permalink)
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Default Re: DC-Advocacy Day

Oh--Matt had another chair incident today. He moved the table during lunch about six inches. You should have seen the people on the other side of the table jump!! Never a dull moment...

Becky[/QUOTE]

It was a priceless moment...Maddie took it in stride
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Old 05-10-2016, 05:00 PM #10 (permalink)
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We just got back to the room after 5 meetings (our two Senators came to us at the same time so we didn't have to do 6 meetings). I'm drained. Exhausted. Physically and emotionally. It was a good day; we had mostly positive meetings and things ran smoothly.

The only resistance we ran into was in one office over Dormant Therapies. Apparently one party (gonna stay non political here) feels the drug companies should pursue those drugs with exhausted patents out of the goodness of their hearts since they are already making obscene profits on other drugs.

I asked my darling to remove his hearing aids, rendering him deaf, and then described my terrible nightmare. The one that lurks in that dark place that I try desperately to keep the door slammed shut on. The one that haunts me even as I am cracking jokes and living in the now. The one where my wish that he lives longer than expected comes true, but as a result we reach that stage where he is locked in and I'm left to execute his wishes and have the ventilator turned off. The one where he is silently screaming to himself, "don't do it Becky, I've changed my mind."

Tears? You bet. In one office the staffer was in tears with us. In another, I had to describe my anger over anyone not providing the incentives when we KNOW that's the only way drug companies will pursue those avenues to a cure. They can charge me what they want for 15 years. I'll bankrupt myself if that saves my husband. If I were a stockholder I'd not expect the company to go into something they knew would lose them money, for God's sake. Yes, I said it. I don't care what upsets YOU about the drug companies, I only care that right now there is no hope that I won't be a widow decades before my time. I only care that a cure might be sitting on a shelf because you don't appreciate the profit motive.

Everyone we say agreed to supporting protecting CRT for ALS and eliminating the 5 month wait for SSDI. Unfortunately, their was little hope for Dormant Therapies right now, Well, there's always another day.

I must make a plug for the ALSA staff here in North Carolina. They were extremely organized, warm, and caring. I don't know how they go through this painfully emotional experience year after year.

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Old 05-10-2016, 05:44 PM #11 (permalink)
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Default Re: DC-Advocacy Day

Becky please stop me to say hello if you see me. I am in a red powerchair. I am wearing a black jacket with a blue/black/orange printed knee length dress. We rested for a few minutes after being on the hill from 730-530 today. We are going to find dinner.
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Old 05-10-2016, 07:45 PM #12 (permalink)
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Default Re: DC-Advocacy Day

Hi Grace - when are you leaving? We'd love to say hello to tomorrow morning if you are not leaving early. We will be here for one more day. It's been an exhausting day. I feel we had an impact. As Becky said our impression is also that the Dormant Act seems like it will not be tackled anytime soon.
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Old 05-10-2016, 09:52 PM #13 (permalink)
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Default Re: DC-Advocacy Day

I want to say thanks to al of you who are there and fighting for our loved ones and all the loved ones to come. I wish I could be there and maybe next year I will. I also want to thank those like Becky who made our stories their stories. It is so very tough to understand the horror of this disease if you aren't or haven't been affected. It also takes a lot of strength and courage to fight for all of us when you are dealing with the disease. Thanks to all of you from the bottom of my heart. I have shared an ALS AWARENESS post each day of this week and my shares have been shared. Strength is in the numbers!
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Old 05-11-2016, 08:15 AM #14 (permalink)
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I'm so sorry that we missed Grace. Doug, did you make it? It was a pleasure to see Mary and Tom and Chally and Beth. This was year three, and with the current rate of progression I doubt that we will make it next year. Who knows though? Matt will be entering the Lunasin study, so perhaps we'll have a good response and get a reprieve!

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Old 05-11-2016, 08:20 AM #15 (permalink)
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Default Re: DC-Advocacy Day

Thank you all for going. I know how hard travelling is and that your collective voices made an impact. I am grateful you went.
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