Where is the ALSA and MDA?

[notme]

Ok

Each year, tons of money is donated to the MDA association.

Where's it going?

It's not going to a great PAL here in another state with no local ALSA and no power chair she needs.

It's not going to the PALS that have no communication devices and are typing with one finger

it's not going to the PALS that have no respite care and have CALS killing themselves to be 3 people in one.

Just where IS the money going?

Sorry--but I don't see that the money is getting to the folks that need it--those with the diseases!

Some with no insurance can't even get diagnosed or a second opinion! Something is wrong with this picture. Some are in limboland for years--and don't qualify for ANY type of assistance with anything.

Am I the only one that sees this as a problem?

On a good note--I'm hearing more and more ALS ads on the car radio lately--so there are at least some pubic service announcements getting out there.

 

[Ms. Pie]

Probably a lot of it goes to administration and research. Seems like they could make things happen for people in need too.

 

[brooksea]

That's the same question Stu asks when there is a pALS in desperate need of equipment or help of some sort. Where are they?

 

[Ms. Pie]

Hmm...we're still not sure.

WHERE DOES THAT MONEY REALLY GO?

 

[sadiemae]

This is a good thread on this very subject.


https://www.alsforums.com/forum/gen...l-disclosures-sex-got-your-attention-yet.html

 

[10steps]

MDA paid for my husband's second opinion on diagnosis since it was done at a hospital that wouldn't accept our insurance. If we chose to stay for continued care at that hospital I believe they were going to use MDA funds for that as well. Our insurance would cover care at another ALS clinic at a different hospital so we didn't feel right using up MDA funds.
ALSA awarded our daughter a college scholarship and a rep has been invaluable navigating our health insurance paperwork and qualifing for programs.

 

[brooksea]

10steps, that's great! Glad your local ALSA is of help to y'all.

It seems mileage varies from state to state and area to area within the state regarding ALS associations.

The MDA payed for a one time visit when my husband had no insurance, but we were told that was it, it's a one time deal. They also gave us a 2K grant for a wheel chair, when they were giving them out. They wanted us to sign a form saying the PWC would be given to them when we no longer needed it (not). We have more than "payed them back" with fund raising.

Now our efforts are going towards ALSGA. And guess where the PWC is going?

 

[asantiago]

I think they both do tremendous good for PALS. I also believe they could be doing SO much more. The exorbitant salaries tick me off. I do completely understand the need to pay well to get top talent to make the organization a success but I don't believe any CEO is worth more than 150K-200K especially in a non profit. CEO salaries are so out of whack across the nation.

I also don't have a problem with the 50K plus salaries, most college grads earn more than that in their carries and you can't expect to attract and retain good employees if you don't pay market salaries.

Like any large business there is going to be waste. What is sad is people lives and quality of life depend on these organizations which is not typical of most organizations. When you have situations as such, then I believe its a new ball game. I think its completely immoral of these people to accept such ridiculous salaries. UNLESS by some crazy miracle they donate most of it to charities but I just doubt that would be the case. The charities exist to help desparate people who are in GREAT need. To accept a salary knowing that every dollar they take, takes from a patient who needs it is sad and immoral.

The unfortunate part is most people who really need these charities are in no position financially or physically to fight the battle to rectify these atrocities.

In reading all posted by indigosd who I miss dearly around here btw, I just get mad there is a lot going on that shouldn't be and its just hard to know where to start to even begin shedding light or getting attention. Even if we could get someone's attention is it realistic we could do anything about it?

I wouldn't want people to just stop giving money to the MDA because they really do a lot of positive things. So exposing them as a bad charity doesn't really serve our purpose. What we really want is for them to make positive changes internally. They seem to have a good business model in that they are VERY successful at raising money. They do tout many discoveries in research, who know how significant they are or if they spent 50 times what they needed to discover them.

I remember a while back they were spending some 2MM? to build a new research facility which seemed like a huge waste of 2MM are there not already thousands of facilities where 2MM could be used towards an actual research project?

I guess I'm rambling terribly and I don't have any answers just a whole lot of questions. I wish I had TIME and resources to take this one on myself.

 

[notme]

I guess what prompted me to post this were people here that can't get the simple things they need just to either communicate or get around. I know MDA will pay for a diagnostic exam. And that several of the ALS organizations have loaner closets for things....but we have PALS right here in our forum that can't get wheelchairs and ways to communicate.

Others that are getting bedsores because they don't have the mattresses they need to prevent them. Cals that are working themselves to death just to care for a PAL with no help from anyone.

Too many people are falling through the cracks. People we know here--and if we have so many here that are in need--this forum is just a small picture of the whole ALS community.

i know research is very important. But so is helping PALS have some type of quality of life. It seems like the national ALSA should make sure that they have offices in EVERY state.

Then you have Stu doing things out of his own pocket. That's certainly where my $$ would be going.

Then you have the ALSA guy in PA that stole 80k. Does the MDA even have loaner closets? if they do--why can't people like Diane not get a power chair? And why is Lobster suffering through a sadistic caregiver? And why is CJ killing herself to take care of her PAL with no respite. And Lupe robbing Peter to pay Paul. Those are just the ones that come to mind off the top of my head.

Oh well, rant over

 

[cukita99]

mda pd one visit n loan me a pwc tht never worked n they wanted me to pay repairs

 

[susanf]

Can I donate to Stu without going through ALSA?

 

[brooksea]

Susan, ALSGA is a totally different entity. And, it's too bad that those affected are some that are donating! The same with ALSA and MDA.

Anyway, here is the way to donate:

http://www.alsguardianangels.com/donate.html

Click on the home button to watch the video of fellow pals that participated in the recent request for video clips for the ALSGA fundraiser.

 

[susanf]

Thanks, I'm still learning the ropes. Stu really helps PALS. I'll see what I can do for them.

 

[BrianD]

Ok

Each year, tons of money is donated to the MDA association.

Where's it going?

Just where IS the money going?

While it is not going to answer your specific examples, here at least is some relevant information.
http://www.mda.org/special/annual/treasurers-report10.pdf
http://www.alsa.org/assets/pdfs/2010-annual-report.pdf

Brian

 

[notme]

Stu and Lisa are the two people that are doing most of the ALSGA stuff, I believe. Two people. And they've accomplished a LOT. That website is definitely worth a read -- and any donations of supplies and unneeded equipment.

I was sitting here yesterday thinking about the people that are here that need so much and wishing I could do more. CJ--with all she is trying to do sent me almost a dozen links to things to use in a book to benefit ALSGA.

I wish I was rich and could help them.