Took Some Pics Of The Disco

[sgaynor]

There must be a better place for your cyncism than this thread....

I'm not saying I disagree with you about soliciting the membership here for gas & RTT's, just that this isn't the place...

.

Well, where would you suggest they get called out? It's being advertised on this site/thread, so....

Their website states up front that donations are primarily for them to make the trip (aka, their vacation):

"Secondary to our main goal of raising awareness for Adrenoleukodystrophy is raising funds for the ALD Foundation. " (bold emphasis mine)

 

[Alaska Mike]

I'd say start a new thread in Fireside chat, instead of this particular thread. If you have a beef with this particular form of "expedition" financing, by all means post it up in a civil manner for the rest of the membership to discuss.

 

[kcowyo]

I really don't care where you call him out... but you're not going to do it here.

The guy has a sick kid and he's trying to do some good. How about showing some compassion, instead of grinding your ax of issues at the expense of what Expedition Awareness is doing? I doubt you truly know his whole story or motivations, despite your critique of his/EA's efforts.

Instead of judging, why not start with his email and find out more about his cause? I'm as skeptical & critical as anyone of these fly-by-night non-profits who solicit our membership for funds, gas, awnings, etc. But I believe Phil's primary motivation is to get help for his young son. So rather than publicly second-guessing his efforts (and being a Father myself) I'm going to give him some leeway.

In addition, Phil/EA didn't start this thread and didn't come on here plugging his cause, he was mentioned second hand by the OP. So there is no reason to fillet Phil/EA here, despite what you know, or what you think you may know.

.

 

[Wander]

I really don't care where you call him out... but you're not going to do it here.

The guy has a sick kid and he's trying to do some good. How about showing some compassion, instead of grinding your ax of issues at the expense of what Expedition Awareness is doing? I doubt you truly know his whole story or motivations, despite your critique of his/EA's efforts.

Instead of judging, why not start with his email and find out more about his cause? I'm as skeptical & critical as anyone of these fly-by-night non-profits who solicit our membership for funds, gas, awnings, etc. But I believe Phil's primary motivation is to get help for his young son. So rather than publicly second-guessing his efforts (and being a Father myself) I'm going to give him some leeway.

In addition, Phil/EA didn't start this thread and didn't come on here plugging his cause, he was mentioned second hand by the OP. So there is no reason to fillet Phil/EA here, despite what you know, or what you think you may know.

.

Well said. It's easy to be cynical and sarcastic, it takes effort to learn the facts before making a snap reaction, I'd suggest that sgaynor spend some time and learn these facts, I also find it odd that sgaynor is new to the forum yet has such a strong reaction. Asking for donation to help pay the costs is nothing new whether it's sponsored prizes for a 10k or travel money for medical missions and if E A doesn't make their case to you then move on, but there is no need to make baseless accusations here.

 

[JSQ]

It's easy to be cynical and sarcastic, it takes effort to learn the facts before making a snap reaction, I'd suggest that sgaynor spend some time and learn these facts, I also find it odd that sgaynor is new to the forum yet has such a strong reaction.

It's possible that, while new to the forum, he isn't new to fourwheeling. And while panhandling for trips may be de rigeur these days, it wasn't always the case.

Which is not to say you can't have a legit cause or bleeding heart story, but when every joker with a roof top tent wants someone else to foot the bill for his dirt road "overlanding" it's inevitable that a good chunk of these people are freeloaders.

Being skeptical is a good thing. It keeps people honest. And when you can weed out the pretenders, you're a lot more inclined to support those who are genuine.

 

[MattScott]

Being skeptical is a good thing. It keeps people honest. And when you can weed out the pretenders, you're a lot more inclined to support those who are genuine.

well said.

 

[TJ Willy]

There is nothing wrong with being skeptical. JSQ - you nailed it. Because there are so many out there who have gotten away with so much.... it makes it hard on others. Especially those of us with no fame.

I invite anyone to call me to discuss what EA is about and why I am doing what I am doing. 940-228-4543

Mr. Snell, To put it simply, if I could trade my RTT (which I don't own) and everything else I have for my son to not have this disease, Adrenoleukodystrophy, then I would. I would give anything to be able to live a normal life. Instead I am cutting grass after work to help fund this expedition. And frankly I dread the day I leave my daugther and son for so long on the road. Nobody here is looking for a free trip. Free is no where near the case either so we are clear. Again, call me and we can discuss the particulars. I have nothing to hide.

Yes - FUEL - PARTS - FOUNDATION - Would you rather I say Haiti or homeless people in South America or ???? Pick your cause... their all out there.... mine is personal. I am one person and not a wealthy one at that... I put those words there so people would know (if anyone donated) where the money would be used. The Foundation part is The ALD Foundation... check 'em out. Great things they are doing in funding research - BREAKING RESEARCH...

Basically, I don't know what else to do. I can't sit by and do nothing. But I can help other parents learn about ALD, the signs and symptoms so that maybe they can get early diagnosis AT LEAST giving their son a fighting chance at living.

A local news station did a good job of researching the disease and really helping to create awareness. Much better than I could do alone. This is a couple weeks old but the latest piece of news I have.

If you all don't mind watching a "Bleeding heart story" then watch the clips. It was a difficult piece for me so I apologize in advance.

http://www.newschannel6now.com/Global/story.asp?S=12770594 -- first part
http://www.newschannel6now.com/Global/story.asp?S=12777886 -- second part with the Jeep and trailer. (trailer is a loaner from Outlander)

Many thanks to those that spoke up here.

 

[JSQ]

Is ALD the disease that Lorenzo Odone had?

 

[michaels]

the photos say they have been moved or deleted...

 

[JEFFSGTP]

Is ALD the disease that Lorenzo Odone had?

YES it is



....and I will also Back Phil and expedition awareness. If you met him in person you would know he is not out to have a free ride vacation...and having met his son, you cant help but like the little guy, so full of life...Chris and I have helped phil on several occasions with trying to raise awareness for his ALD, the foundation and his trip. Phil is one of the nicest guys you could meet, he would go to hell and back for a stranger or acquaintance, much less a friend (of which I am proud to call him mine). If I could afford to take off and pay my way I would go with him to help out, but I have a wife and kids I have to put first and If one my kids had some rare illness/disease there isn't ANYTHING I wouldn't do to help my kid have a chance to live. if you don't believe anything phil said in his post, call him and talk to him...I guarantee he will change your mind.

 

[TJ Willy]

Is ALD the disease that Lorenzo Odone had?

Hi. Yes, that is the disease. His parents developed Lorenzo's Oil. Unfortunately that oil does not cross the blood-brain barrier so it is not a real treatment. I can prolong life. Quality of life however is questionable. My wife and I have not decided if we would even apply to take part in the limited study. I really want to focus on what is being developed.

I respect the Odone's tremendously.

 

[TJ Willy]

the photos say they have been moved or deleted...

Micheals, not sure what you mean. I checked the links and it was still live. At any rate, as soon as I can get the bits from KAUZ, I'll post them on my website. There is a radio interview there now. (on my website.)

Can I provide any further info or links for you?

 

[TJ Willy]

YES it is



....and I will also Back Phil and expedition awareness. If you met him in person you would know he is not out to have a free ride vacation...and having met his son, you cant help but like the little guy, so full of life...Chris and I have helped phil on several occasions with trying to raise awareness for his ALD, the foundation and his trip. Phil is one of the nicest guys you could meet, he would go to hell and back for a stranger or acquaintance, much less a friend (of which I am proud to call him mine). If I could afford to take off and pay my way I would go with him to help out, but I have a wife and kids I have to put first and If one my kids had some rare illness/disease there isn't ANYTHING I wouldn't do to help my kid have a chance to live. if you don't believe anything phil said in his post, call him and talk to him...I guarantee he will change your mind.

Thanks for your kind words Jeff.