Als tdi

[jamorel]

Does anyone know anything about his organization? I am skeptical... but I want to know more.

 

[Big Mike]

It is a legitimate organization. Check out their website and forum.

 

[jamorel]

I did, but I still want to learn more. I read their financial statements for 2008... and I looked at some of the things they are doing. I guess I am just not sure what to think. I would like to think they are legitimate, but it bothers me that they personally contacted my friend. Maybe I am just paranoid

 

[halfin]

As I understand the story, ALS TDI was started by family members of someone with ALS in order to direct research specifically towards an effective treatment for ALS. The founders felt that existing research projects were not getting the job done, perhaps too theoretical, and that a new organization was needed that was oriented towards this one goal. Their main technique has been to work with ALS mice, which have been genetically engineered to have a gene taken from certain human families with ALS, that causes an ALS like disease in the mice. ALS TDI has tested a huge number of drugs and therapies on these ALS mice, trying to find something that extends their lifetime. Unfortunately, by and large they have not had much luck. They got a big increase in funding about 3 years ago, $6 million a year for 3 years from the MDA. I think that is about up but MDA recently put some more money in, I heard.

They did find one drug last year which shows some promise, not a cure but it does extend life in the mice. This is pretty much the only thing they have found to work in almost 10 years of trying. So at this point they are trying to find a pharmaceutical company to partner with and take the drug to the next step so it can be tried in humans.

ALS TDI is legitimate but they do seem to ask for money a lot. Unfortunately that is pretty much the rule with ALS groups, it is not a disease with much funding. Some criticize ALS TDI for focusing so much on mouse research, but at least they do have this one potentially successful drug now, and maybe something will come of that.

 

[Zaphoon]

Thanks for that info Hal! I appreciate the research behind it.

 

[jamorel]

Thank you, Hal, that does help a lot. My concern was the fact that they ask for money a lot... and they are all paid very well. I hate to be skeptical, but it seems there are so many organizations that present themselves as a worthy cause only to pad their own wallets. They contacted my friend who has ALS, and they contacted a local ALS org here in Canada, the org they were looking for funding and I suspect they are hoping that my friend will also send something their way. It left a bad taste in my mouth. When I read their financials, everyone makes well into the six figures... well into... and I started to wonder what their real motive is.

I guess I am still wondering, but if they are doing the work and producing something that might actually save lives, then it is worth it.

 

[jamorel]

I may make someone angry by even asking the question... but isn't $427,452.00 US a bit excessisive for an annual HHI when working for a not-for-profit? I am still wondering, and I know I am new to ALS and the forum... and all of the facilities that go with it. I may ask stupid questions or say something that will enrage someone... but I really want to know. I want to know who is behind finding a cure and who is possibly working under false pretenses.

 

[indigosd]

money....one of the deadly sins...and yes, it is over the top. :[ Go look at ALS Guardian Angels
Now that is a true NONPROFIT organization that does more for PALS and CALS than any organization.

 

[Al]

I've never been overly excited by them either.

AL.

 

[Big Mike]

I do quite a bit of posting on TDI, but I have to admit I am disappointed that they haven't produced one compound to date that has yet to make it to a clinical trial. Not a very good track record.

 

[jamorel]

I am always concerned about money and motives. I started my own fundraising effort because of it, and I donate to our local ALS Society. I met with them and looked at what they were doing and how much of the money raised was spent on salaries and admin before I even considered raising money for them. They report only 13% to 18% goes toward salaries and keeping the lights on. They have a modest office in a modest building, they wear modest clothes and they are modest people who really care.
However, they are not working on finding a cure as that is out of their realm, and I get that that type of work costs money. I don't want to knock TDI as 1) I know so little about them at this point and 2) their cause is my cause, and 3) I am glad that SOMEONE is behind it.

Indigosd - I went to the site actually, when I first got on here and I will go have another look as soon as I can take the time to dedicate and read through it (I have a one year old among other things which don't allow for flexible time).

I also created my own site to raise funds because of my frustration with... well, everything. it is Hope for Joy - A site dedicated to helping those who have been affected by ALS if you want to look. I am funding it myself and working for free. I have had a lot of support from the society and from writers and writing groups so I hope that it takes off. It it does, I want to expand it to help as many people as possible. This is the beta.

I guess that is the thorn in my side with everything I have experienced thus far with ALS: there are a lot of therapies available and a lot of theories and they all seem to be charging a lot for their services. It is hard to separate the wheat from the chaff

 

[Big Mike]

Although I am disappointed in their track record, I do think that TDI is committed to helping find meaningful treatments or a cure. The biggest part of the problem is the Rx companies--they are more intersted in placating to a larger market of erectile dysfunction patients than finding treatments to serious, orphan diseases such as ALS. People usually blame government for all the woes in the U.S., but it is the big corporations that deserve the most blame.

 

[jamorel]

Hi Big Mike... I completely agree. I was just talking to my husband last night about the incredible size and power the big corporations have. It is crazy that companies which create soap and insecticides should wield so much power in our society. It is the fox watching the hen house, if you ask me. With ALS TDI... I have to be careful what I say. I don't want to imply that they are corrupt as I have no idea... but I have to ask the question. As far as ALS deemed an orphan disease... I am afraid that I don't believe that to be the case in the future. It's just a real shame that it has to be a pharamceutical money-maker before they notice... and then how quick are they to find a cure when it becomes their big cash cow. ugh!

 

[Big Mike]

Hi Jamorel,

It's good you are skeptical, Jamorel. Asking questions is a good thing.

It's self-evident to me that the special interests and corporations run our government and country. Same goes for the Supreme Court. Politicians of both parties are more interested in catering to their needs and worrying about the next election than passing good legislature. It's sad, it really is.

Yes, I agree with you that ALS cases will continue to rise, especially since the baby boomers are reaching the prime age when ALS commonly strikes.

Mike

 

[jamorel]

This seems hopeful... and legitimate

http://www.projectals.org/PDFs/P2_ALS_draft_press_release.pdf