Al, did cut me a break.

[SMillheiser]

Al,

Could you cut me some slack and give me access to Member's List and email. I am only trying to help those that need it. I cannot respond to their needs if I can't correspond with them.

Do you think it is in anyone's best interests for PALS in need to be denied help like this? Please reconsider.

STU MILLHEISER
THE ALS GUARDIAN ANGELS FOUNDATION

[CindyM]

Hi Stu- this is not AL's decision, I believe. If you were around in the days when this site was hacked by porn and other nasty stuff you'd know why we are happy with the new software. Your membership privileges will kick in soon. Regards, Cindy

[Al]

Hi Stu. Did you get the Private message I sent you. Haven't got a reply about the donation you sent here. I'm curious why you need access to our member list? Post a message with your email and those that are interested can contact you. That way people won't get unwanted, unsolicited emails.There is no way for you to get access to the email addresses here anyway. You would have to private message everyone and that is not even a good idea because a lot of them have passed on. Not trying to be difficult but that's the way the software is set up.

[hopingforthebest]

Dear Al

Thank you for not giving email addresses to this gentleman.


I believe he is the real thing but agree with the confidentiality issue. Believe you me, if People from this site need his help, he will get contacted. I did notice that he even posted for everyone his telephone number.

Once again, I appreciate no one getting my info from this site; but applaud Stu for his generous, caring spirit of giving! God will bless him for it.

Thanks Al.

Patty:-D

[Al]

I have been told tonight that he has helped out another of our members. People are making contact through his phone and email. Seems to be working OK.
AL.

[sharonca]

Hopefully the web site for ALS Guardian Angel Foundation will be up and running soon. Does anyone have a problem with the web site being given out when it is available? Just asking. We know for a fact that this is not a scam - wish there were more generous people like Stu with no agenda other than helping PALS.

Sharonca

[Al]

We'lll put the site up because it helps ALS patients, caregivers and is relevant to this site. It won't be advertising false hope or cures. It won't be making wild claims for treatments and supplements. I'm hoping in time it will work itself into a self supporting foundation.
AL.

[SMillheiser]

Al,

I never got your PM.

I thought that members had a way to email others. I don't even know what the members list is...but I thought it provided a means to email other mrmbers. I do not want ANYONE'S email address. I justwant to send an email thru the site while maintaining the recipients privacy. Don't most forums do this?

Some PALS/CALS are too embarrassed to ask for help. Some stories touch me, and I'd like to proactively reach out. Also ,I do not think it is appropriate to discuss financial issues in full view of other members.

In summary, my instincts are to reach out and offer help to those who will not ask for it. It should be done in private for the PALS/CALS sake.

Stu

[Al]

Hi Stu. When we talked I thought I told you how many posts you needed before you could private message anyone. I'll try to resend the PM I sent you. If I don't get a reply I'll call you.
AL.

[Farmgal from ND]

Who is this Stu guy and what exactly does he do for people with ALS ?

[Al]

Can you run through it again Stu?
AL.

[sharonca]

I think that Stu confused Private Message and E-mail. When a new members comes on they have to have a certain number of posts before they can access private messaging. He didn't have enough.

Sharonca

[Lorie]

I think Stu needs to post about the help he is offering. I hope his intentions are good ones. Post the website name? Those that are interested can check it out.

Lorie

[MtPockets]

Stu has answered my email and he is working on the web page. Evidentially this is a brand new foundation to help ALS victims and their families. Given some time maybe he will get it all together so we can access the information.

I appreciate anyone who would start such a project. Like most of you I just hope it is for real. We really need something like this to help everyone. I am looking forward to seeing the results of his efforts.

[CindyM]

Maybe, in his excitement to help, Stu announced his plans before he was able to organize a legal foundation to receive funds, get whatever certification his state or province requires to solicit funds, get his website going, and so on. I know starting a project like this in my State requires a lot of work behind the scenes. Stu, if you are running into a lot of issues like the one I mentioned above, hang in and keep at it!

[sharonca]

Cindy - FYI - the foundation is legal and set up. The web site is just not quite finised. And Stu is real and reliable. I've met him.

Sharonca

[CindyM]

Good! Glad to hear it. Thanks, Sharonca.

[SMillheiser]

Maybe, in his excitement to help, Stu announced his plans before he was able to organize a legal foundation to receive funds, get whatever certification his state or province requires to solicit funds, get his website going, and so on. I know starting a project like this in my State requires a lot of work behind the scenes. Stu, if you are running into a lot of issues like the one I mentioned above, hang in and keep at it!Corp


Cindy, I have set up everything. I'm a 501-C corp. and have received the applicable tax preferences from all necessary authorities. As far jumping the gun about receiving donations, I have personally been the sole source of funds. There is nothing new about my efforts. I began doing since November 2007, before I had even considered setting up a foundation.

About the "in his excitement comment", excitement is the last emotion I feel. I'm doing this because after meeting my first few ALS patients, I became profoundly sad about their plight. Despite appearances, I am not very strong. If ALS affected me like this, I can't imagine how it psychologically affects PALS and their families. But then, I could never be as strong as the PALS/CALS I meet. I am not being patronizing. I can't go 5 seconds without scratching an itch. How could I ever adjust to this disease like you guys have?

[CindyM]

Sorry, Stu. I guess I didn't read your first posts carefully enough. I wish you every success in this endeavor! :-D

[Lorie]

We need all the ANGEL'S we can get!

Lorie

[SMillheiser]

Lorie,

Can you possibly contact me? I do not have PM privileges on this site. I'm hoping you can do me a big favor that may be mutually beneficial. Thanks!

STU MILLHEISER
THE ALS GUARDIAN ANGELS FOUNDATION
SMILLHEISER@AOL.COM
ANGELS4ALS@AOL.COM
Office: (949)488-9894
Cell: (949)233-3045

[Lorie]

I have checked out his organization my self. I would be the first to be leary about someone taking advantage of ALS patients and their Families.

I have checked out his organization my self. I spoke in length also last night with him on the phone. Please give him a chance. I am going to help him how ever I can. He has not asked for anything monetary. Just my help. I could not help monetary wise, other than the small donations I make to ALS myself. As you all know, I have dedicated my self and my Life to ALS. He is doing both. There is nothing I wouldn't do for you people, my brother and this disease. I will help Stu. He can count on that.

Stu, Please tell the the story that you told me last night. I think you are doing a great thing here and deserve to be heard.

Lorie

[MtPockets]

I also have been in communication with Mr. STU MILLHEISER and find him to be genuine and willing to help meet the immediate needs of ALS families. Finally someone who cares about trying to help with no strings attached.

I know in the past we have seen many on here that said things that sounded too good to be true, but this time I believe it is true.

For those who have said where is his web page? It is being worked on and will soon be up for all to see. This is a new Foundation. Please be patient with him while he works out the details.

I encourage anyone with a urgent need to contact him at his e-mail address at:
STU MILLHEISER
THE ALS GUARDIAN ANGELS FOUNDATION
SMILLHEISER@AOL.COM (SMILLHEISER@AOL.COM)
ANGELS4ALS@AOL.COM (ANGELS4ALS@AOL.COM)
Office: (949)488-9894
Cell: (949)233-3045

[sharonca]

I'd like to add - other than the fact that Stu is a great guy - the foundation could use more people who are willing to help. Do you have a special talent? Say PR, fundraising, or are you just a good idea person? Perhaps a person doesn't need a "thing" bought for them - they need information. Are you a wealth of information?

We all know THE thing that is going to make our lives easier is not always physical. I needed something to do with my time - now that I cannot work and it is getting more and more difficult to get around. Stu gave me that thing - I'm helping with the foundation. My hands still work fine and I can type really really fast. And I feel like I am contributing to a worthy cause. I was getting really bored having my days be just about me.

And Capt Al is right - this is a worthy cause that is in its infancy.

Sharonca

[CindyM]

It will be fascinating to watch it grow. Thanks for keeping us all in the loop, everybody.

[Al]

Stu. You will have private Message function very shortly. A couple more posts should fix you up.
AL.

[trustinggod]

Hi Friends,

I too spoke with Stu this week and I'm meeting with him on Monday.

I believe he is sincere and only wants to help.

I'll let you know more after we meet on Monday.

TGIF !!

Jeanne

[SMillheiser]

Al,

I posted under the "equipment" thread seraching for a used van, but it never was posted. Other people posted similar messages and there was no problem.

Isn't time to give me the privileges of other members? I'm confused as I'm sure you now know I'm for real. Don't you want me to use this forum to help PALS in a selfless and caring way? I'd think that I might even get priority, but I don't seem to even get normal privileges.

Stu

[CindyM]

Stu- your thread has been approved. It would have made it into the forum anyway- the software only delays threads from new posters for a few hours to give moderators time to check for spam.

You seem to be blaming AL for the way the software works. These are not Al's rules, just so you know. Al and I are volunteers. In AL's case, he is also a PAL who gives many hours to this board, in spite to the fact that he now only types with one finger, if at all. I only point this out because I know how compassionate you are towards PALS.

Another hero around here is David. David owns this board and pays for the expense of running it out of his own pocket.

I try to help both AL and David but my diaphragm is weakened and until i get a Pi-Pap I find it necessary to sleep as much as possible. None of us are asking for sympathy, but I think you should cut Al some slack, if nobody else.

BTW - even if we tried to jump-start your member's privileges, it would mean writing special code to the software. This is an expense a totally volunteer operation should not be expected to incur. Especially since your membership privileges will probably kick in within a few days.

I understand your frustration but if you'd been around here during the days when hackers and spammers were the rule you would know why most of us are grateful for the new software.

Hope this rather long explanation helps. I"m actually glad you raised the issue, since it gives us an opportunity to remind everybody the reasoning behind some of the rules, and it gives me a chance to give due credit to both Al and David.
Regards, Cindy

[MtPockets]

Only a few more posts Stu and it will kick in. I know you are the real thing and look forward to you being able to reach everyone.

[Al]

Stu , you have access to everything now but sometimes our software will kick a link or email address into the moderated pool. As Cindy said, we try to check it every few hours. Even some long time members get put in there. Inconvenient? Necessary? Yes.
AL.

[Lorie]

Stu, I would like to Thank You for what you are doing for Tim and my Family. You will never know how much this means to us and how greatful we are. I sent this to you in an E-Mail. I wanted other people to know you are a man of his word.

Thanks again,

Lorie

[Lorie]

Thank You Stu and Guardian Angels for ALS . Stu called me Friday evening. He has a Van ready for Tim that will be coming from Texas to Alabama. I could never tell Stu enough how Grateful and Thankful we are. We have to push and pull on Tim like a piece of meat when HAVING to take him to the Doctor. Which is the only place we can get him to. When we get the VAN the first thing he want's to do is come to my home again. And we can take him anywhere he wants to go in his power chair and VAN.

Thank you Stu for giving back some of Tim's Freedom and Independence to him. He never gets to get out of my Mom's house. Now we can LIVE!

And for having one less worry on me. A BIG one!


PS. I will help Stu anyway I can. I think this THREAD needs to be in a better area of the Forum. To be read more often.

Lorie:-D

[Al]

Hi Lorie. I moved the thread up here because maybe some of us can gain some hope from Stu.
AL.

[Lorie]

Stu, is for real. We are going to talk Monday about getting the Van here. I am going to work with him on his Foundation as much as I can do.

I will keep you guys updated!

Lorie

[MtPockets]

Thank God for people like Stu. I wish there were more like him that were willing to help those of us in this battle.
God bless you Stu.

[gulfportgal]

Who is this Stu guy and what exactly does he do for people with ALS ?

Stu is a man who comes out of the blue and helps PALS with anything they are having trouble with getting through the normal channels of insurance or ALS orgs loan closets, etc.

I posted once on LWALS (Yahoo group Living with ALS) that I was upset about not being able to get a patient lift for my sister because of the usual gaggle.

Stu pm'd (emailed me) from the LWALS site asking if we would let him help get the lift.

He's a real honest to goodness good samaritin who is simply looking for a way to do what he did for us in the LWALS forum, here.

Pat H

[Lorie]

Stu is an Honest man of his word. He E-Mailed me tonight about Tim's van. I will help him in any way that I can contribute to ALS Patients and their Caregivers.

Lorie

[JerryAlex]

:)Stu , you have access to everything now but sometimes our software will kick a link or email address into the moderated pool. As Cindy said, we try to check it every few hours. Even some long time members get put in there. Inconvenient? Necessary? Yes.
AL.

Lorie,
So glad to here you are getting a van for your brother.
Peggy Alexander

[SMillheiser]

Thank you all for the kind words. You have no idea the boost it gives me. However, I could never have gotten Lori the van if not for our volunteer, Sharonca. She deserves so much credit for all of her help.

If we stumble upon a Porsche, its mine!

Stu

[CindyM]

LOL, Stu- You deserve it! Cindy

[Lorie]

Thank you Sharon. You are an Angel too!!! Stu and Sharon are having Tim's Van shipped to us next week. I could never say Thank you enough.

Stu, Give me something to do to earn this. How is the Web Site going?

So Grateful in Alabama,

Lorie

PS-Stu, I couldn't afford the Insurance on the Porsche and the Van and my other Vehicles!! I would not not how to feel driving something like that anyway. lol

[sharonca]

Wouldn't it be fun to find more vans for donation? The van for Lori and Tim came from Tom - offered for donation on this site. Thank you Tom.

Sharonca

[Lorie]

We can work on that! There ares some people with BIG Hearts!

Thanks Again, (thank you is not enough).

Lorie

[Lorie]

This morning I received the VAN that Stu give to Tim. He was do happy when I told him about it today. I told Stu on the phone that when I was telling Tim about it. He was tring to say Thank you. I asked him if he was tring to say it for me to tell Stu and Sharon Thank you. He nodded his head yes.


I don't know if Thank you is the right words. Or if there is a WORD to describe how I feel. Stu, You are AWESOME!! And Sharon toooooo!!!!!!

Lorie:-D

[Shane the Pain]

Hi Al, this is Shane the Pain in SD CA, i just signed up and am trying to post a query about some of my symptoms, they are: once i get up in the morning i become naucious (sp?) making it difficult to eat, late afternoon i'm okay. i also experience tons of clear snot in the morning and excess siliva. i have recently stopped taking rilutek and have cut back on my lithium to one dose 150 mg/day. i also cannot post, which is why i'm writting you. thanks, Shane


Stu , you have access to everything now but sometimes our software will kick a link or email address into the moderated pool. As Cindy said, we try to check it every few hours. Even some long time members get put in there. Inconvenient? Necessary? Yes.
AL.

[SMillheiser]

I sign on. It shows that I'm signed on. Then, when I try to post or access members list, I am told I am not signed on. I cannot use the site. Can you please help?

Stu

[Al]

David did some updates today but they should not have affected anyone like that. I'll check into it.
AL.

[Al]

Everything looked Ok from my side Stu. Let me kknow if it's still broke.
AL.

[Al]

Your post worked so everything else should.
AL.

[sharonca]

HI Al - Stu Millheiser wanted me to post this for him..

Al,

As of now, I cannot use the forum for anything. Can't get my mail, can't post, can't access members list... etc. My main concern is the unanswered mail. Please help.

Stu

THanks Sharonca

[kelly]

Stu,
I feel so bad that you are having such a challenging time reaching out to people. You seriously have so much to offer our families. Please be patient...I am sure the moderators are working like crazy to fix this situation. Fondly, KR

[Al]

Ask him to try again. I reset his listing. Hope that works.
AL.

[Al]

I can see you're online right now Stu. You are in so should be able to get everything. I sent a PM at about 107.
AL.

[Lorie]

Stu, You need anything, Call me.

Lorie

[SMillheiser]

Lorie,

You just take care of Tim!
(Unless you have a spare million or so lying around that you wish to donate)

I'm thinking of you guys and still hoping Tim can put that van to use.

Stu