Sjogren's Awareness...that's us

[iraisin]

OK. I have an idea. It seems we have quite a few artists as members to this forum. We also have some very smart thinkers. We also have some very good communicators. Let?s form an army of SJS warriors to expand awareness and teach the world.

April is Sjogren?s awareness month, so we will have time to develop the works and strategize the communications without causing undue stress on any of us. If you feel it will take away from your dealings, be the cheer team, we?ll need it.

I propose we generate art (poetry, paintings, essays, sculptures?whatever talents we have here) and next April we put them out to the world to purchase the originals and prints to help support this forum, the Sjogren?s Foundation, etc.

We will have to deliberate and vote on who the beneficiaries will be. But in my mind, more awareness helps us all regardless of who gains the revenue.

We can each contact our local news stations in April to share with them the campaign as a public service piece or special interest piece of their programs. We can also contact our local art alliance establishments?maybe set up a traveling exhibit if they want to contribute to the shipping and logistics.
It may sound grandiose, but we have time to take it one step at a time.

What do you all think?

[artistangie]

wow! that is an impressive plan of action!  im in!  im not a planner but a worker bee....

[MissyLouWho?]

I think that's a great idea!  I want to help!  I'm an artist so I can paint some stuff.

Is anyone here a songwriter/singer that can write a theme song for us?  Something top 40ish that could make it to the radio?  I was listening to Demi Lovato's "Skyscraper" just now and though it's about a love gone wrong, I was thinking about how powerful she was sounding.  Saying "you can take everything I am, go ahead and try to tear me down..."  maybe something about "I only have so much to give, but don't think I don't care about you, there's only so much I can do..."  I don't know...   I'm not a songwriter!

Anyhow....I'M IN!!!

[Joe S.]

Okay, Graphic Novel: a Manga book on Sjogren's? Song: Call Me Sjogren's (Call me maybe)? Any other ideas?

[iraisin]

La, la, la. I swim in the ocean, dry as a bone. La, la, la. I swim all day and can't find my comfort zone.

Ha! don't get me writing a song. I'm gonna stick to painting!

[iraisin]

I have 3 paintings in my head now. I'll have to start sketching them out soon. one of them will take quite a bit of massaging to get the point across. One will be a woman rising from under the water (from the view right above). She will be cracked and textured like a desert.

The other two are more like cartoons. One will be a living room scene on one side and white blank on the other, with a woman walking from the living room side into the blank side with a surprised look on her face (brain fog).

The other one will be a split scene too, a woman dressed in work clothes with her work satchel walking the sidewalk from her home to her work. Little cartoon gremlins will be pulling her to point she is almost falling backwards. These gremlins will be labelled: depression, pain, fatigue, etc.

I think those are pretty descriptive of Sjogren's...don't you?

[CAT1962]

I sent you a private message!!! I am IN!!

[iraisin]

Awesome!!! OK. I have to think. What to do first. I'll start making a list of things to do and any ideas. I'm still working on another project for the board - trying to pull information on staying here at the Texas medical center. Haven't figured out yet how to even post that, since I have rail maps and that sort of stuff...i digress....

Anyway, more to come! I am so excited. I'm so tired of hearing about the comments people are saying about Venus and other sorry remarks. People just really don't understand this disease and we need a voice. Too, there's a lot of people walking around with this and don't even know it.

Thanks you guys for supporting this idea. It makes me feel good. I'm prepared for a slow acceptance and interest, but just like the Susan G. Komen foundation - it started off really small, so there's no telling where this will go. I am staying optimistic, why be any other way about the things we choose to do?

[Bulldog girl]

I live in a pretty small town in Mississippi. I have decided to make it my mission to educate the people of my town about sjogrens because nobody knows about and even most dr.s don't know anything about it and I'm tired of this lack of awareness! This is a state college town,too! I want to form a sjogrens support group but not sure how to go about. I also want to set up a booth at every little town celebration we have and we usually have a lot going on. I would love to go on the local news and discuss symptoms,etc. what do y'all think?

[iraisin]

April is SJogren's awareness month. So that would be a great time to go "campaigning". That will give you enough time too to strategize.

I think the Sjogren's Foundation has materials you can download and get printed.

Just make sure your stuff looks buttoned up and professional - people will take you more serious that way.

This site I think offers cards too.

I'm proud of you. Think about it - if we don't do it, who will?

[Meld256]

Hello Bulldog girl,

I applaud your (as well as anyone's efforts) to further educate others about Sjogren's Syndrome.  You may want to contact the Sjogren's Foundation about how to begin a campaign to do so. 

Please let me welcome you to the forum, too!    We're glad you found us.  I think you'll find it a great group of friendly and helpful people, always willing to encourage one another. 

If you like, you may want to post on the Social Board area with an introduction.  It's not absolutely necessary, of course, but more members will see it and be able to respond to you with a welcome.

Looking forward to hearing from you more.  Take care,
Melinda

[Gayle]

Bulldog, Welcome! Great idea!!!

I am in... no artist, not a songwriter and surely not a singer,,, lol - you all are lucky you can not hear me!!!

Give me something to do - I will do it!!!

Gayle

[iraisin]

I'm in a recovery phase right now - start taking medrol pack in the morning. But there's some things I want to start working on. I'll post more soon...promise. I'm good for it. Just need to deal with this in front of me right now before I can move on to truly productive things.

Thanks for your patience. I am excited about this and think it will be a great for us.

[mshistory]

I'm a good technical writer and researcher - if you need a concise, informative leaflet about Sjogren's, that's what I can contribute! I'm no artist, that's for sure!!

[iraisin]

I would like to talk to a lawyer about setting up a 501 c trust of sorts that would help delegate any donations/proceeds to selected beneficiaries like Sjogrens world and the sjogren's foundation. So anyone here is a lawyer or knows one that would offer the help.

You guys can start brainstorming a name for our group like:
The Sjogren's Art League or something like that - brain not being very creative right now...

Need guidance and paperwork done. How do we manage such a thing, etc. Are there protocols to follow...