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?
wow! that is an impressive plan of action! im in! im not a planner but a worker bee.... :)
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!!!
Okay, Graphic Novel: a Manga book on Sjogren's? Song: Call Me Sjogren's (Call me maybe)? Any other ideas?
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!
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?
I sent you a private message!!! I am IN!!
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?
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?
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?
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
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
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.
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!!
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...
I'm glad you asked about protocols, because, as a registered non-profit organization, Sjogren's World must recuse itself as a participant in any of these activities. This means that any activities or projects you feel compelled to activate must be done as a separate entity, not as affiliates of sjogrensworld.org.
This site cannot take part in actively raising funds, either for itself or other organizations, nor can it act as a relay or holding site for any sales or donation related activities. As you've probably all noticed, our fund raising is limited to a notice on our home page regarding the contributions made possible by Amazon.com by shopping there through our link, and one mention in the FAQ section regarding donations. These restrictions are to maintain our non-profit charitable organization designation.
OK. Thanks for that.
So are we able to continue communicating with each other about this? Or do I need to find an alternate method of communication between us volunteers.
Well, everyone. I'll make some calls to some folks I know who know lawyers and get that paperwork drawn up. I keep you filled in on that front.
and I guess Sjogren's Art League will be the name.
I had some ideas about the poetry and how to display it. We can have it hand written, then have it scanned, blown up, and printed like art for the exhibit. That would look really cool.
So start dreaming up art and poetry that describes Sjogren's: beit moody, via color, literal translations, whatever. have fun being creative. And teach people what this is.
I'll be back with more as soon as I call some folks.
i just want you to was still alistenin' :D
I don't think communicating here would be a problem, it may even help some others find ways to promote awareness in their own area. You may find, however, that for any detailed planning or for communication involving the use of identities or specific locations, PMs would be better.
Thank you, Linda. Will do.
Angie, I don't understand what you said. Please say it another way for my brain?
that i havent left the thread, that i am still reading and watching and will still help :D
oh. Ha!
Thank you.
There's a couple where I work that has set up a 501c. The wife is on vacation right now, but I will ask her about it all when she gets back.
Also, I understand I need a board of directors. Anyone interested? I will also ask my rheumy and my cousin who is a corporate lawyer to be on the board.
I can, if you want/need me!
Thank you, Gayle. Check your e-mail.
count me in someway...
I WANT TO JOIN THE SJOGREN'S AWARENESS TEAM...IS THERE A SURVEY OR SOMETHING THAT I CAN PUT MYSELF DOWN ON TO BE A SJOGREN AWARENESS WARRIOR. you really rock lady and I have to commend your efforts...Don't you think so members??? Is there anyone else that wants to join me too? So many changes are occuring and we have to be able to reach people somehow someway....I am wanting to support Sjogrens World and be productive in a way that we can help everyone out there that needs it. I am available to be on your board of directors if so needed.
I buy thru Amazon and Sjogrens World and I want to help with Sjogren's Awareness..What can we do iraisin??? ~sass~
OKAY!!! You're in!
Yes, I need board members - but don't know how many.
I would like a lawyer, a writer, someone associated with an art museum, someone associated with a medical institution, and patients (an accountant wouldn't be bad either).
I want to make this world wide like Sjogren's World. I am just getting educated on this. So whatever info folks can offer to help guide me thru this would be helpful.
And as always, your love and support to keep me going as I'm sure I will face difficult times and counter productive comments/attitudes.
Thank you.
Doing this From Texas require a minimum of 3 board members. There is no limit though one must be careful of having too many as it confuses the issues. Articles of Inc are a good start as is a fictitious name search, I sent you the number to call in Tx for that.
Gayle
I used to work as a corporate paralegal in Texas - I drafted all the paperwork for incorporating businesses, maintained their minute books... and did name searches. You can check name availability online now with the Secretary of State, but if I recall correctly, there's a small fee for using the online service. Of course, this was 8 years ago ;D
Forming a non-profit is a lot more work because you have to apply for a charitable status with the IRS, and you know the IRS... it's not like one or two forms. I remember sending off a several hundred page packet to try to get one company non-profit status with the IRS!
sooo... ms,..... are you joining us? :-*
Of course I'll help if I can! As long as no one depends on my memory of how incorporating a NP business works in Texas... ;D Last semester, I was teaching an American history class and someone asked which President had been impeached - Jackson or Johnson - and for the life of me, I couldn't remember! Talk about embarassing :-[
I do give you my support, but I will not be able to help beyond praying for your success!
I have enough on my plate at this time dealing with my Lymphoma, and I know you lovely people understand.
I will be your cheerleader! "Go, Go sjoggies, you can do it"
Love and prayers
Cricket
Cricket! I think you are the perfect cheerleader and are now officially in charge of cheerleaders!
MS - all will have to be done by atty or something.. but your knowledge is a great asset! I just hope you don't do what I do... When I can't think of something, it always comes to me at 3 a.m. It really stinks as I don't get enough sleep as it is and anymore I wake up at 3 everyday now as there is ALWAYS something I don't remember...
Also, when that 'fog' sets in and someone asks you a question you can't remember the answer to, do what I do... yes, this time, do what I do... I turn it back on to them... 'so you want to know which president was impeached? Who here knows this answer??? No one? Okay... How would you go about finding that answer? Yes, of course, google! You want to know? Google it'!
Answer done, not embarrassed and life is good...
Gayle
I talked to my rheumy about the death certificate issue discussed in another thread - she understood what I was saying, but said letters would just get thrown in the trash. She said awareness would change things - so I told her about this project. She loved the idea and said it sounded great.
She mentioned that the more people that get diagnosed - as many do not, that would also help increase research and that awareness would help build those numbers.
So, now that the seed is planted, I'll wait a bit then ask her if she wants to be on the board.
Also, legalese is difficult for me to translate. So, I will have to speak with someone for guidance on the business plan, budget, and filing.
I do have a lot going on in my life, which is why I felt that next April would be a good target to launch since it's Sjogren's awareness month. I will keep moving toward that target, so if it seems like I've dropped off for a bit, I probably have - but will come back and work it.
So, be patient w/me...I have Sjogren's, I have a full-time job, I do side work, and I am an artist privately and proffessionally - so there's much life to juggle.
More updates to come.
Get your creative juices flowing folks!!!!
We are on our way to generating a Sjogren's Art Exhibit!!!! YaY!
After some research I realized that I don't have the funds or the business development knowledge to form a 501c. sigh...
So! I contacted the Sjogren's foundation, signed up to be an ambassador and then sent them a letter proposing an exhibit and in it, I explained all you wonderful, talented people were willing to create the Sjogren's story with art, essays, poetry, etc.
Well...today they called me back! They loved the idea and they want to start a discussion and seemed excited about it.
So get your pens and brushes ready. Take your vitamins and supplements. Eat right and get your rest. 'Cause we are gonna ROCK this HOUSE!!!!
So, I need you to commit once again so I can get a good count on what we will be submitting to showing.
I will create a new thread repeating this announcement.
we be rockin! Count me in.... not an artist but I will figure out something!
GAH!!! I'm crazy busy right now with my classes (I'm a college instructor) but I do write and would love to be able to contribute a poem or something - just depends on when it is and how much time I have!