ALS Association Survey

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Nuts

Extremely helpful member
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Joined
Feb 23, 2014
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2,636
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Lost a loved one
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01/2014
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NC
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Littleton
I received that and emphasized that while I appreciated all the research, what was severely lacking was financial help and equipment support for the pals and their families who are suffering NOW. Similar to what we vets families get.

Sherry
 
Curious if anyone participated in the recent ALSA Webinar? I registered, then got an e-mail to the effect that only current P/CALS were welcome as they were oversubscribed...pretty thick for the Internet age.
 
Someone please tell me why they still have over 100 million in their accounts! It's a very close minded survey also.
 
As mentioned on the call, "committed" funds whose projects haven't met milestones yet are still on the balance sheet as surplus until the actual expenditure is incurred. But the call also recirculates much of what I've experienced in the past (and offered to help improve, to no avail).
 
It's no different than our local meetings. Much ado about nothing. I go because of the other PALS and CALS there. We communicate and inform one another. Those of us who are able go out to lunch and more information is exchanged.

Sherry, I wrote in almost exactly what you said. I've also articulated this at our local meetings and to my doctors....basically whoever that would listen. Some of us don't have the $$$ to remodel or buy accessible vans much less hiring help to take care of our needs.
 
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