Petition

Status
Not open for further replies.

indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,805
Reason
Lost a loved one
Diagnosis
07/2009
Country
oz
State
oz
City
RURAL
"Most of us dealing with ALS have blindly entrusted our well-being to organizations such as the Muscular Dystrophy Association (MDA) and the Amyotrophic Lateral Sclerosis Association (ALSA), who are supposed to be our voices, advocates, and primary means of finding a treatment or cure ." WE ARE NO LONGER BLIND! PLEASE join us and sign this petition.

Petition Against ALSA National | Facebook
 
Why? What is your desired outcome? What do you expect to happen other than convincing some possible donors not to give their money?

The DEA has spent more than likely millions of dollars to bring charges against professional sports team doctors for steroids and pain pills. Our legislators read books on the senate floor to prevent a vote which is their job at an average salary of $169,000. They have hearings over steroid use in baseball. After more than a year and millions of dollars the ATSDR still doesn't have the registry online which any IT team worth their salt could have done in a few months tops. Insurance companies refuse to pay for procedures. The FDA won't approve drugs or procedures for years. 36 states won't allow medical marijuana despite proven benefits. Out of all those wrongs why target the organization which actually does something for PALS?
 
I think it's because the ALS organizations don't seem to be doing as much as they could. I know the ALSGA has done amazing things for people and all most people have to do is just ask. I'm not saying that ALS.org isn't doing anything because I know they are helping out my mom in ways that I couldn't do. But ALS.org doesn't go out of their way to help in some situations and you tend to have to harass them to get anything accomplished. I'm all about doing the ALS walk in October and doing what I can to help, but it does make you wonder....
 
Anything I have asked ALSA for, they have been right on it. They are paying for my home health aides while my husband and caregiver recovers from surgery. We have received tons of loaner equipment. Our rep is always happy just to talk or lend a sympathetic ear, and she is very knowledgeable about ALS. They run two great support groups in my area. I am happy to support this organization.
 
Why? What is your desired outcome? What do you expect to happen other than convincing some possible donors not to give their money?

You honestly don't expect an answer to those questions, do you? If they had answers, they would be there in the petition. Instead, all you see in the petition is vague grumblings about research efforts and advocacy efforts, along with fairly large complaints about salaries.

It's always easier to tear down than it is to build up. It's also easier to complain about how somebody else does their job than it is to find ways that you can help that person do their job. It's also easier to be jealous of the success of other organizations than it is to do the hard work to lay the foundation for success in the future.

Out of all those wrongs why target the organization which actually does something for PALS?

Because they'd have to admit their own culpability in electing the governments that do those bad things. Far easier to sit on the porch and point fingers at everybody else. Not to mention the fact that their public "servants" will likely tell them to buzz off -- in polite bureaucratese of course.

Every time the subject of the shortcomings of ALS organizations comes up, I ask the same question: what were you doing for ALS patients a year before the PALS in your life was diagnosed? The usual answer that I get is "Nothing." And that's why we are where we are today -- too many "Nothing's" and not enough "Something's".

Petitioning against ALSA is a "Nothing", not a "Something", and will lead to the same result.

Sorry, KM. You know I love ya to death, but I can't join you on this one.
 
:confused: Sorry, I don't get the point of this petition.
If you don't like the way the org advocates, then get involved in the ALSA and effect change from the inside.

My $.02 fwiw.
 
My name is Paul Hale. My brother Dan has been researching ALS for 11 years. He recently sat me down and explained in detail what it is, how you get it and his theory on how to get rid of it. He explained to me how Lou Gehrig got it. I'm trying to get people to listen but it isn't easy.
 
If your brother knows what causes ALS he must be the smartest person in the world. I would be very interested in what he thinks.
 
I am not saying that I am pro or con ALSA. However, in response to Tajmom's post, people are given loaner equipment because someone has passed away and the equipment is DONATED to ALSA - ALSA is not buying this equipment. I am not speaking for all ALSA chapters, but when financial help is given for an aide, our local chapter CHARGES! our local support group.
 
in response to Tajmom's post, people are given loaner equipment because someone has passed away and the equipment is DONATED to ALSA - ALSA is not buying this equipment. I am not speaking for all ALSA chapters, but when financial help is given for an aide, our local chapter CHARGES! our local support group.

Obviously ALSA's loaner equipment is passed around, not new, there is nothing wrong with that. Our chapter has respite care grants; these come out of $$ raised by the chapter via donations and fundraising, they never charge other PALS for someone else's care!
 
Edge77 - I would love to hear your brother's theories. Really. Does he have a website that details his hypothesis? I'm all ears.
 
Tajmom: "Our chapter has respite care grants; these come out of $$ raised by the chapter via donations and fundraising, they never charge other PALS for someone else's care!"

I am uncomfortable for obvious reasons in getting involved with this topic publicly. I need to put things into context. ALSA has referred more patients to ALSGA for help then I care to think about. In fact, until recently, they had been our biggest source of grant referrals. As far as respite grants, I am under the impression that we fill more respite grants referred by ALSA than they fill themselves. I can go on infinitum but we have spent a fortune on patients whose legitimate needs they reject. The only return call I have EVER received from ALSA in three years was a few weeks ago. It was only because I told them I would not accept their referrals if they don't return my calls.
 
Last edited:
LOVE YOU!STU HUGS Lori
 
Edge77.
I also have 2 ears and they are open. :smile:

Peter
 
Last edited:
Allen, You know that I also love you! You are so correct with this line,"Every time the subject of the shortcomings of ALS organizations comes up, I ask the same question: what were you doing for ALS patients a year before the PALS in your life was diagnosed? The usual answer that I get is "Nothing." And that's why we are where we are today -- too many "Nothing's" and not enough "Something's". I have been a Registered Nurse since the early 1980's, worked all across the USA in every medical speciality that you could imagine and I NEVER ONCE had a ALS pt nor were we taught about ALS in Nursing School or in any continuing Ed. I can honestly say that until Web was diagnosed, the only thing that I had ever heard about ALS was that Lou Gehrig died from it. My point being that there is absolutely no PUBLIC AWARENESS or education. Is that not what ALSA and MDA and all of these other organizations should be doing? You need to be on our team and help us.

Jeff, I couldn't agree with you more about the ineffective way that our Government works. How is that any different than these organizations that lobby for funds from the Government and do not make good their promises. You need to be on our team and help us.

tajmom, This is not about the local chapters. There are many local chapters that do a lot of good for the people that are fortunate to live in a area that they serve. What about the PALS that have the misfortune to live in a state that there is no chapter? How do we make certain that they are not left out because of geographic locality?

edge77, I am puzzled why you thought that your post had anything to do with this topic.

Honestly, I think our ALSA should be patterned after the ALS organization in Canada.
 
Status
Not open for further replies.
Back
Top