ALSA, ALS TDI, etc

Amandagall5

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Hi, I have a question about ALS research, not sure if this is the correct place to ask. My husband was a DAV and passed away from ALS in 2015. I’m thinking about redoing my will and wanted to know what are good organizations that could benefit from donations in my will? I’ve heard that the ALS association is not the best place to leave any money to. I want it to go where it is not wasted on administration costs etc.
Thanks.
 

patrick123

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Most local chapters of ALSA are run and funded by the Chapter itself. They can always put the money to good use.
Patrick
 

Ken15

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Good question. I have also seen, on this forum, comments that ALSA (national) may not be the best place to donate, though no specifics.

Charity Navigator is one of the best sources for evaluating the quality (and transparency) of charitable organizations. The drawback, from a ALS perspective, is it requires 7 yrs of IRS Form 990's and $1M in total revenue before issuing a rating. Many ALS-related charities haven't been around that long (e.g., Team Gleason).

There are a number of state ALS chapters that have received ratings (all are either 3 or 4 stars).

Below are screen shots to give you an idea.

Ken


alsa.PNGccals.PNGneals.PNG
 

lgelb

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Charity Navigator is one part of the story, but I wouldn't use it as a reason to donate or not. And it's true that local chapters of any national organization often need to be self-supporting, but that doesn't make them wise stewards of funds, or worthy causes.

For myself, knowing some of the ways that the ALSA spends its funds, I have donated equipment and supplies, but not money.

One option, Amanda, is to locate a university or private sector research program in your area or elsewhere, and donate directly to that. You may already have a university that you are aware of; it is not hard to find out whether they do basic or translational research that could lead to improved treatments for ALS. Most university sites are searchable.

Whatever you decide, thank you for considering a donation to a worthy cause.

Best,
Laurie
 

Nikki J

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I think the chapters have to give a percentage to ALSA national. I am among those who choose to donate elsewhere. If research is your focus there are a number of places that you can give to for that purpose specifically. The big clinics attached to major educational institutions usually have research programs attached. Examples are Mayo JAX, Hopkins and Mass General. There are certainly more. Wherever you choose you can be specific as to area of research or just direct it to ALS Research Program at x institution
 

KimT

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Ditto to what Laurie and Nikki said.
 

Doglady

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You could also ask your local ALS association if there is a way to donate to a specific program they offer or start a new one you think is needed AND how much of your donation would go directly to the service versus to administration.
 

Nikki J

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It is true you could target an ALSA donation to a chapter but it still ends up as part of the budget and likely means other donations will be shifted away for other programs, admin costs, and payments to national. According to the ALSA financial statement last year they received over 10 million from chapters
 
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