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lgelb

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Below see some notes from the TDI site from this year's international MND symposium (always worth reading, though not very encouraging) -- does anyone else think these inputs/outputs are questionable?

I'd be interested in the operational definition of "provided services" is, if only half the recipients ventured into an ALSA-branded clinic, which, of course, ALSA doesn't actually operate, during the year. Hopefully, "services" constitutes something beyond getting e-mail or participating in fundraising walks.

Nicole Yarab, Director of Certified Center Programs at the ALS Association, provided a window into their services. According to Yarab, the ALS Association employs 374 people across its 38 chapters in the United States, including 115 staff dedicated to care services. The National Office, where Yarab is located, employs 50 people, 6 of which are devoted to care services. In 2013, the Association provided services to upwards of 15,000 people living with ALS in the USA. About half of those people, 7,328 according to Yarab, visited one of the Association’s 43 “centers of excellence” at least once.
 
Most large well known charities are like a Rolls Royce... appealing, sleek, conservative lines outside (we all see), very plush inside (few really ever get to see) but... outrageously expensive to maintain and insure.

MPG? (miles per gallon) Dare you ask.

But... ALSA has a four star rating from the charity watch dog groups including the BBB.
 
I was overwhelmed by the ALSA's response after hubby's back surgery. We were thrust from him walking beforehand into him being unable to move his legs at all on his own when he was discharged, and we did not have his PWC. His neuro stopped in the day before discharge, realized the situation we were in, and contacted the ALSA. They had a loaner PWC delivered an hour before we got home the next day (a two hour drive from the loaner closet). There was no concern about the late notice; they only wondered why we didn't contact them directly (I honestly was such a mess that I never thought about doing so).

At every clinic appointment the ALSA rep visits, answers any questions we have, and asks if there is anything we need. The VA is very generous with equipment, but I am confident that the ALSA is always there if we need something while we wait on the procurement process. I don't know what other support we may need in the future, but I know one place we can call.
 
Charity Navigator just looks for financials showing ratios of services to administrative XP. I can make the total for "services" look like anything I need by defining "services" how I choose. I could get a four-star rating for anything. Some orgs just don't bother or care.

We had an ALSA thread a while back on this topic, though I think we were focusing on research allocations, which certainly the ice bucket $ should bump up. I was not concerned about research grants since that just clusters who evaluates proposals, in my exp. not a good idea (think about NIH and scores of review panels, then think of ALSA and one).

But I am concerned about services -- what they do for whom and how much the slice of indirect costs are, since that is their flagship stated mission.

As I've said, the chapter here is fine and I'm glad for anyone who's getting ALSA or MDA or GA help anywhere. I just think the premise of an über ALSA is fundamentally flawed and this is just one more straw in the wind, certainly not cost-efficiency worth bragging about internationally.
 
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