A big bone to pick

[jamorel]

Hello,

I went into Wikipedia, looked up ALS and I decided I should edit. I thought ALSGA should be there as should the ALS societies across Canada, so I added them. ALS Canada is there as is ALS TDI so it seemed fitting that the societies and Guardian Angels should be part of the wiki search. I added them and received an email from a fellow named Paul Wicks telling me that they are not for profits and should not be included. And ALS TDI is...a for profit? A government org? ?


I have sent an email and will hopefully have the above resolved in short order.

 

[jamorel]

and this is where I get confused... it states also on wiki that Jamie Hayward founded and is on the board of directors of ALS TDI. Either this is a huge glaring error or...?

 

[trfogey]

ALS TDI is also a non-profit organization. It is involved with laboratory research concerning ALS. Under the standards that Mr. Wicks is setting for your links, ALS TDI shouldn't be there either. And, if he's going to insist that ALS TDI should remain on the page, there are a number of other ALS-related research projects that deserve to be there.

It is BS like this -- the pushy and obnoxious attitudes of its supporters and the apparently insatiable desire to aggrandize themselves at the expense of other dedicated folks in the field of ALS research and support that leaves a sour taste in a lot of mouths about ALS TDI.

 

[jamorel]

me too, trfogey. I had to take a long walk to cool my head. I couldn't find an email for Wicks, but I sent one to Hayward, who runs the company Hicks works for (PLM). I have my personal opinions which I try to keep very much to myself (as everyone does)...but when fair isn't fair for everyone, I get really irritated. I will take the high road though and say, "maybe it is an honest mistake?" In the mean time, I deleted TDI from wikipedia external links/resources and will wait to see if is is relisted or if anything is done about it. It is a small thing...but not really. Not when people who are first introduced to ALS are looking for information and come to (somewhat reliable though highly referenced) global resources which are clearly biased...not cool.

 

[jamorel]

ok, now that I have cooled off and taken the time to read Wick's email more thoroughly (without the emotion) - he did say that wikipedia could not link EVERY non profit site, and given that, it may make sense that the wiki term "ALS" may have ALS Canada, the ALS Association and TDI...but I am not sure who should be the one to decide which should be included and which should not.

My personal issue - yes, here it is...my personal issue is that I have a bad taste in my mouth toward any one who sells hope. Joy had hope, we all did, and I saw the vultures come in by the flocks offering the magic pill to extend her life. I facilitated a fundraiser that brought her just short of $50,000 and I watched her turn half of that over to a medical spa like facility offering chelation therapy. I wasn't about to tell her what to do or dampen her spirits, so I didn't interfere.

I watched her follow the restrictive diet of "Eric is Winning" and said nothing as she lost weight rapidly - which we all know is the worst thing you can do when you have ALS. She continued with tests for Lupis and started the treatment, but it almost killed her, so she stopped after only a couple of weeks.

I guess I have become very skeptical, and in a few years, I will possibly relax. Or not. I will say that I have absolute respect for the ALS Society however, as when it came right down to it, it wasnt the salesmen of hope who were in the hospice in Joy's final hours. In the end, the only person "from the outside" was Jane, from the ALS Society, who had driven all the way to Red Deer from Calgary to join the family in a dark, solemn room with people weeping and Joy leaving.

So when someone tells me "only some not-for-profits" can go on something as widely read as wikipedia, I take offence. For me, it is still personal, although I suspect that neither Paul nor TDI would know that, nor can I blame them. It just is

 

[notme]

Well, that just seemed wrong--I put it back in--maybe they'll keep it. Added it under External Links--so far, it's still showing there

 

[jamorel]

ALS Societies are gone...TDI is back. All is as it was.... sigh. Thank you for trying...

All I can say is I love what I have seen from the ALS societies here in Canada and all of the people I have come to know who know Stu, love ALSGA. Keep up the great work and I will keep rooting for you.
Jodi

 

[HelenL]

this may be small consolation, but the public schools do not allow my kids to use any information from Wiki sites, as they are so often full of wrong information...

 

[trfogey]

jamorel,

Instead of adding the ALS societies, try adding the following two links to the article:

alstherapyalliance dot org --> The ALS Therapy Alliance, Dr. Robert Brown's ALS research project, based at the University of Massachusetts.

alsconsortium dot org --> The Northeast ALS Consortium. Nearly all of the leading ALS researchers in the U.S. are affiliated with this group.

Any reason that Wicks gives for deleting either link to these groups cuts back against the ALS TDI link as well. ATA is nearly as large as ALS TDI, does the same type of research and is directed by one of the most eminent researchers in the ALS field (as opposed to ALS TDI which is directed by bankers, biotech researchers, MDA, and the Heywood family). NEALS covers the entire spectrum of ALS research, both clinical, therapeutic, and theoretical.

If Wicks wants to delete ATA, ask him what contributions ALS TDI has made to ALS research that compare to those Dr. Brown and his team have made. If he wants to delete NEALS, ask him which organization is more connected and to more representative of to all of the ALS research (not just drug-related) being done in this country -- NEALS or ALS TDI?

When push comes to shove, ALS TDI is a niche player in the actual ALS research world. The only thing that they have demonstrated an aptitude for is burning through other people's money.

Good luck.

 

[jamorel]

First I will see if they are listed...then I will see if they have papers which should be referenced as that is one of the requirements...and then I will edit accordingly. I would love to see more research facilities highlighted as well as resources for those diagnosed. I know from my experience and from Joy's that is it difficult to know who to trust and where to turn when this diagnoses comes down. I am sure everyone here can relate and even if you find someone/something to hold to, there is nothing in the way of regulation that can confirm that what you believe is actually reality. I can not eliminate myself from this category either as I am a well meaning individual who could easily support someone who I believe is as invested as I am. That is the root of the problem with not just ALS but all areas where money and emotions colide. So thank you trfogey - I will look and pick and do due dillegence and add if I can...I think wiki comes up in the top three of every search for ALS...so ensuring those who should be represented, ARE represented, is a good first step.

 

[jamorel]

delete delete. As much as I would like to rant about the wrongs of the world, this is probably not the time or the time.

 

[Paul Wicks]

Dear all,

Apologies for coming to this discussion late, I only just found it as I do not check in regularly.

I think there has been some misunderstanding and some crossed wires.

Best wishes

Paul

 

[jamorel]

You are right, Paul, you are late.
However, websites that fit into what is apparently accepted by Wikipedia may now be listed and will do due diligence to insure that others are added as per regulations.