HELP with Exposure for ALS Guardian Angels!

[indigosd]

This is a message that I got on my facebook to help with exposure for ALSGA and I am asking all of our forum friends and family to actively participate.

Hello all! I hope everyone is doing well and staying warm. I know I'm sure not! Thank you all for your support of ALS Guardian Angels Foundation!

If you are a member simply out of support, thank you! However, I am messaging everyone in the group with a favor to ask of those ALSGA members that have been directly, or indirectly, impacted by Guardian Angels. I recently spoke to Karen Taylor Bass, a New York PR Expert, and received some advising as to how to bring more exposure to the world of ALS, and expand support for ALSGA. I will soon begin compiling a "strategic release about the organization" (as Mrs. Bass calls it) entailing what has been done by the organization, who has been helped, reflections from those that have been helped/family members of those that have been helped, and why it is important to give. Ideally, this release will tell its recipients about ALS and ALSGA, but I would like it it to consist primarily of personal stories and reflections. When were you/a loved one or friend diagnosed with ALS? What has life been like with ALS? How has ALSGA (or other foundations) helped you?

When finished, this compilation can be used in a variety of ways, varying from media send outs, local news, pamphlets for the organization, and event planning. My goal for the summer is to piece together some sort of event in support of ALSGA, however I would first like to compile an available-to-all release. I know some of ALSGA's supporters have put on great events benefitting the foundation, and I'd like to have something tangible available for those who would like it. Even at it's most basic (pamphlet form), this can be given to others to encourage donations.

Please, if you have a story, send it to me! Let everyone's voice be heard!

Also, please feel free to pass this along to any and all that would like to share their story/reflection as well.

Thanks to all, and have a wonderful February!

Shaine Millheiser

 

[sadiemae]

This is such a great idea! We are lucky enough not to need the help, but just knowing it is there is such a relief. I have told many of the vendors we deal with about this wonderful organization and they will help out if they have any unused equipment.

 

[indigosd]

bumping this back up to the top HOPING for support from the forum!

 

[Twinsmom]

I think it's an awesome idea!

 

[indigosd]

bumping this back up to the top!

 

[indigosd]

Has anyone responded to Shaine? Here is the link to the ALSGA on facebook.
ALS Guardian Angels Foundation | Facebook

 

[KinzaDAF]

I don't have any personal ALSGA-related stories to pass along but I am VERY interested in helping to get the word out about the Angels. The question *I have had is, since the "official" ALS organizations don't seem to work with ALSGA, how can word be gotten out to ALS patients and families? ( ALSGA can't "advertise" in any of the "official" magazines, events, etc, etc ) Other than doing things like wearing our ALS Guardian Angels t-shirts to all kinds of ALS events, how the heck can we spread the word about this organization and what it does? How many other forums like this are there where people could be reached? Ideas, ideas?

Debbie

 

[Twinsmom]

I'm surprised there's not anyway to advertise in ALS publications. Don't they sell ad space? I'm going to check into that. If they do, then I may be able to help get some ad space and design some for placement, if ALSGA is interested.

 

[indigosd]

Debbie and Melody, I don't know that what we want to do is advertise what ALSGA does to the masses....Stu is already overwhelmed and doing it all with his own money. WHAT WE NEED TO DO IS ACTIVELY ADVOCATE IN GETTING HIM MORE MONEY AND RESOURCES! ALSA and the rest of them are not interested in sharing their cut of the pie [in my humble opinion] They are interested in getting more money and funding not in giving it away. For the love of God, ALSA and MDA refer people to Stu! Debbie, if you want a real eye popper read my financial disclosure thread. We need to encourage people to purchase the t shirts so that Stu has more money to help us. "If you have come to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together." ~ Aboriginal activists group, Queensland, 1970s ...

 

[KinzaDAF]

I will take a look at your thread for sure. I understand the need to generate funds. I'd like to suggest to people that they can ..."Be an angel, help/donate to....". I have wondered for instance, whether fliers asking for donations could be handed out at say, something like Lou Gehrig Day at the Chicago Cubs, or the Yankees, etc, could be done, but figure that the ALS groups sponsoring these things wouldn't "allow" this. Where can we reach people who might be willing to make donations? We need to do some serious brainstorming!
*** I have ordered my ALSGA shirts!

Debbie

 

[Blubear]

I ordered my t-shirt last week. I am so excited to get it! I am going to talk to the owner of where I work and see if we can set up some sort of donation sign for the ALSGA. While people are waiting in the lobby, they would see it and perhaps put some money in there. It would be great if we could have some pamphlets too. Travel doesn't have anything to do with ALS, but really, nothing does. Gotta start somewhere!
Kay Marie, let me know when you get those things put together!
Hugs, Kari

 

[Blubear]

Okay, had another idea, I looked up the local walks for ALS in our area. There is one in Tacoma in September. I have emailed the head representative of the walks, to see if I could set up a booth at the starting point, which would be all about the ALSGA. I could sell t-shirts and take donatons and raise awareness. I think this would give us enough time to prepare if they would allow it. I know it is a benefit put on by the ALSA, but for heavens sake if they refer people over to Stu, they should understand. I will let you know what they say.
Hugs, Kari

 

[Blubear]

Also, they are having a walk in Seattle in October. If they say they wont allow it, that will quite frankly piss me off, since Stu takes on the ALSA referrals! My dad also is friends with one of the board of directors of the ALSA, so if I cant get approval through the people who put on the walks, I can work on getting it though the ALSA. Keep your fingers crossed! But Kay Marie, I will need those pamphlets, and if I could set up a computer there and play a video of the people that have been helped that would be great too. Or even a tv, with a DVD video that plays over and over again. I will keep you posted.
Hugs again, Kari

 

[indigosd]

Kari, the first post in this thread is a copy and paste from Shaine Millheiser, Stu's daughter. I don't think she ever got it done. She was asking people to send in their stories of how ALSGA has assisted them. If you really wish to help raise awareness and money for ASLGA I would suggest that you contact Stu and ask for direction and input. You can reach him on facebook. I will see if he will come over here and peek on this thread. Love you two. Kay Marie

 

[Blubear]

I will shoot Stu and email and see what we can do. Thanks for the heads up!
Luv ya!, Kari