Old 07-01-2010, 12:53 PM #1
indigosd's Avatar
indigosd indigosd is offline
Very Helpful Member
 
Join Date: 2009
City: RURAL
State: oz
Country: oz
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,784
indigosd is an unknown quantity at this point
indigosd indigosd is offline
Very Helpful Member
indigosd's Avatar
Join Date: 2009
City: RURAL
State: oz
Country: oz
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,784
indigosd is an unknown quantity at this point
Arrow Petition

"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
indigosd is offline  
Old 07-01-2010, 04:54 PM #2
ZenArcher's Avatar
ZenArcher ZenArcher is offline
Senior Member
 
Join Date: 2007
City: McEwensville
State: PA
Country: US
Diagnosed: 02/2007
Interest: I have been diagnosed with ALS.
Posts: 672
ZenArcher is on a distinguished road
ZenArcher ZenArcher is offline
Senior Member
ZenArcher's Avatar
Join Date: 2007
City: McEwensville
State: PA
Country: US
Diagnosed: 02/2007
Interest: I have been diagnosed with ALS.
Posts: 672
ZenArcher is on a distinguished road
Default Re: Petition

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?
ZenArcher is offline  
Old 07-01-2010, 05:01 PM #3
luvnmm's Avatar
luvnmm luvnmm is offline
Member
 
Join Date: 2010
City: Henrico
State: VA
Country: US
Diagnosed: 09/2009
Interest: I am a family member of someone with ALS/MND.
Posts: 295
luvnmm is on a distinguished road
luvnmm luvnmm is offline
Member
luvnmm's Avatar
Join Date: 2010
City: Henrico
State: VA
Country: US
Diagnosed: 09/2009
Interest: I am a family member of someone with ALS/MND.
Posts: 295
luvnmm is on a distinguished road
Default Re: Petition

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....
luvnmm is offline  
Old 07-01-2010, 05:26 PM #4
tajmom's Avatar
tajmom tajmom is offline
Member
 
Join Date: 2009
City: Fairfax
State: VA
Country: US
Diagnosed: 09/2008
Interest: I have been diagnosed with ALS.
Posts: 138
tajmom is on a distinguished road
tajmom tajmom is offline
Member
tajmom's Avatar
Join Date: 2009
City: Fairfax
State: VA
Country: US
Diagnosed: 09/2008
Interest: I have been diagnosed with ALS.
Posts: 138
tajmom is on a distinguished road
Default Re: Petition

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.
tajmom is offline  
Old 07-01-2010, 07:20 PM #5
trfogey's Avatar
trfogey trfogey is offline
Extremely Helpful Member
 
Join Date: 2008
City: Raleigh
State: NC
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,017
trfogey is on a very distinguished road
trfogey trfogey is offline
Extremely Helpful Member
trfogey's Avatar
Join Date: 2008
City: Raleigh
State: NC
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,017
trfogey is on a very distinguished road
Default Re: Petition

Quote:
Originally Posted by ZenArcher View Post
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.

Quote:
Originally Posted by ZenArcher View Post
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.
trfogey is offline  
Old 07-02-2010, 01:58 PM #6
Mike27's Avatar
Mike27 Mike27 is offline
Member
 
Join Date: 2005
City: Edmonton
State: Alberta
Country: CA
Diagnosed: 10/1993
Interest: It's only a part of my life, not my whole being!
Posts: 280
Mike27 is an unknown quantity at this point
Mike27 Mike27 is offline
Member
Mike27's Avatar
Join Date: 2005
City: Edmonton
State: Alberta
Country: CA
Diagnosed: 10/1993
Interest: It's only a part of my life, not my whole being!
Posts: 280
Mike27 is an unknown quantity at this point
Default Re: Petition

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.
Mike27 is offline  
Old 07-02-2010, 03:50 PM #7
edge77 edge77 is offline
New Member (Say Hi)
 
Join Date: 2010
City: Scarborough
State: ME
Country: Uni
Interest: Other
Posts: 0
edge77 is on a distinguished road
edge77 edge77 is offline
New Member (Say Hi)
Join Date: 2010
City: Scarborough
State: ME
Country: Uni
Interest: Other
Posts: 0
edge77 is on a distinguished road
Default Re: Petition

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.
edge77 is offline  
Old 07-02-2010, 04:03 PM #8
joelc's Avatar
joelc joelc is offline
Moderator
Forum Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,787
joelc is on a very distinguished road
joelc joelc is offline
Moderator
Forum Moderator

joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,787
joelc is on a very distinguished road
Default Re: Petition

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.
joelc is offline  
Old 07-02-2010, 04:15 PM #9
strikeout strikeout is offline
Member
 
Join Date: 2007
City: Brick
State: NJ
Country: US
Interest: spouse is PALS
Posts: 178
strikeout is on a distinguished road
strikeout strikeout is offline
Member
Join Date: 2007
City: Brick
State: NJ
Country: US
Interest: spouse is PALS
Posts: 178
strikeout is on a distinguished road
Default Re: Petition

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.
strikeout is offline  
Old 07-02-2010, 04:26 PM #10
tajmom's Avatar
tajmom tajmom is offline
Member
 
Join Date: 2009
City: Fairfax
State: VA
Country: US
Diagnosed: 09/2008
Interest: I have been diagnosed with ALS.
Posts: 138
tajmom is on a distinguished road
tajmom tajmom is offline
Member
tajmom's Avatar
Join Date: 2009
City: Fairfax
State: VA
Country: US
Diagnosed: 09/2008
Interest: I have been diagnosed with ALS.
Posts: 138
tajmom is on a distinguished road
Default Re: Petition

Quote:
Originally Posted by strikeout View Post
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!
tajmom is offline  
Old 07-02-2010, 06:05 PM #11
Miss's Avatar
Miss Miss is offline
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,757
Miss is on a distinguished road
Default Re: Petition

Edge77 - I would love to hear your brother's theories. Really. Does he have a website that details his hypothesis? I'm all ears.
Miss is offline  
Old 07-05-2010, 06:20 PM #12
SMillheiser SMillheiser is offline
Member
 
Join Date: 2008
City: san juan capistrano
State: california
Country: US
Interest: Created The ALS Guardian Angel Foundation
Posts: 261
SMillheiser is on a distinguished road
SMillheiser SMillheiser is offline
Member
Join Date: 2008
City: san juan capistrano
State: california
Country: US
Interest: Created The ALS Guardian Angel Foundation
Posts: 261
SMillheiser is on a distinguished road
Default Re: Petition

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 by SMillheiser : 07-05-2010 at 06:23 PM Reason: spelling
SMillheiser is offline  
Old 07-05-2010, 06:50 PM #13
sadiemae's Avatar
sadiemae sadiemae is offline
Extremely Helpful Member
 
Join Date: 2009
City: Reno
State: NV
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 2,397
sadiemae is on a very distinguished road
sadiemae sadiemae is offline
Extremely Helpful Member
sadiemae's Avatar
Join Date: 2009
City: Reno
State: NV
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 2,397
sadiemae is on a very distinguished road
Default Re: Petition

LOVE YOU!STU HUGS Lori
sadiemae is offline  
Old 07-05-2010, 07:52 PM #14
peter57's Avatar
peter57 peter57 is offline
Member
 
Join Date: 2009
City: Millicent
State: S.A.
Country: AUS
Diagnosed: 10/2008
Interest: I have been diagnosed with UMND/PLS.
Posts: 432
peter57 is on a distinguished road
peter57 peter57 is offline
Member
peter57's Avatar
Join Date: 2009
City: Millicent
State: S.A.
Country: AUS
Diagnosed: 10/2008
Interest: I have been diagnosed with UMND/PLS.
Posts: 432
peter57 is on a distinguished road
Default Re: Petition

Edge77.
I also have 2 ears and they are open.

Peter

Last edited by peter57 : 07-05-2010 at 07:53 PM Reason: spelling again, sigh
peter57 is offline  
Old 07-07-2010, 02:26 PM #15
indigosd's Avatar
indigosd indigosd is offline
Very Helpful Member
 
Join Date: 2009
City: RURAL
State: oz
Country: oz
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,784
indigosd is an unknown quantity at this point
indigosd indigosd is offline
Very Helpful Member
indigosd's Avatar
Join Date: 2009
City: RURAL
State: oz
Country: oz
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,784
indigosd is an unknown quantity at this point
Default Re: Petition

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.
indigosd is offline  
Closed Thread

Tags
als, alsa, cure, petition, treatment


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Please consider signing this stem cell petition, Thinking of one for placebo? and ma edjohnson General Discussion About ALS/MND 3 12-28-2012 07:47 PM
Please sign our petition if you haven't already! Ms. Pie General Discussion About ALS/MND 21 02-29-2012 10:46 AM
veterans benefits petition for guardianship sadiemae General Discussion About ALS/MND 5 09-29-2009 10:09 PM
Petition online . JamesMcC General Discussion About ALS/MND 0 06-19-2009 08:21 PM
UK residents ..petition to No 10 Jennifer51 General Discussion About ALS/MND 2 03-26-2009 01:44 PM
IPLEX Petition gbrown General Discussion About ALS/MND 2 08-16-2008 06:55 PM
*Project Fiver* - Petition for my wife with ALS Bill The Pony Stories of Hope 6 06-04-2008 08:34 PM


All times are GMT -5. The time now is 07:31 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016