Crazy Idea For World Lupus Day May 10

April 18th, 2010 by Jules Leave a reply »

So I am busy thinking of crazy ideas once again. This one is kinda immediate and urgent as May 10 is not that far away.

I want to do something big-ish in honour of World Lupus Day on May 10. Something where any one can collaborate on through the wonders of the internet. What exactly that consists of, what that thing is, I am still not sure. I do know that I want to to spread far and wide, beyond the reaches of TMA and my Geeky Pleasures connections. I want to collect a lot of different “things” in honour of this day and then host them all in one easy spot for people to find (with links pointing people to YouTube vids or blogs etc created for this).

Some ideas already tossed out at me are:

  1. Art Projects
  2. Music
  3. Stories
  4. Poetry
  5. Videos

My friend Ryan suggested to me ” You could go “we are the world” style, pick a song you think represents the cause, have people redo it, and edit it together” but what I was actually thinking was going on better if anyone was up to it. The symbol of Lupus is the butterfly. I was thinking maybe some of you would like to write for me your very own butterfly songs. It would be even cooler (and I can’t believe I am thinking this as I have not sung in public in so very long) if there was a song done that I could sing myself and I would create a video for it. GAH! I seriously cannot believe I am thinking that but it would be kinda cool I think.

I was also thinking I would create a FB event and for once spam the crap out of people to join in and have them spam the crap out of it for others to join it and that way it gives opportunities for many people to contribute in some fashion.

Any other suggestions, help, ideas would be greatly appreciated. Or maybe someone should tell me I am being an idiot for even suggesting a thing.

If you do not want to leave suggestions in the comments below, then email me here.



  1. Denise Hudson says:

    If I wrote a butterfly song, would you sing it? You could even write some words if you wanted. and show me some songs you liked that were in your style (because I know my style is a little off the path sometimes).

    I like this idea. Or if you don’t like me to do it, you could find another musician to help you flesh out the tune – and I’ll find chords. I know how to do that. And there are other musicians on TMA (or other places!) who can accompany and do the type of stuff I do too. You prolly know this though.

    Just suggestions 2cents and all that :)

    These are good ideas you have :)

    • Jules says:

      If you’d like to write one, that would be awesome. If more people want to write some, that would be awesome as well. The more songs the better IMO. Now that doesn’t mean I will sing them all (if any).

      Tentatively, I want to say yes to your wonderful offer, Denise. I may chicken out last minute and decide not to sing it but your vocal range and mine are very similar so you’d be able to sing it if I decide I can’t. I don’t know of how much help I can be, but we will certainly discuss this more in private and soon.

      Thanks for the offer :)

  2. Joe Covenant says:

    If you are looking for a pre-written song that people could get on board with… *Butterflies*
    (made famous by Dolly Parton I think)

    Nice song for all that !

    ;’ )

    • Jules says:

      As I’ve already stated when Ryan made a similar suggestion, I don’t want pre-written. I want original material for this project, regardless of medium.

      And I cannot think of a single pre-written song that would mirror what the Lupus butterfly is symbolic of, let alone “The Thousand Faces of Lupus”

  3. Denise Hudson says:

    Well, it sounds like you want lots to choose from, and lots of stuff. So I can certainly do something myself-from-me if I think of it and you can see and your solution sound flex-y and good to me depending on what you think.
    yay :)

    • Jules says:

      I do want lots of stuff, yes. But I also want a me thing as well. The more people who contribute to this, the better. I want as many people as possible to contribute to this in as many different ways as possible. I am not going to say no to any contribution. But until I hear something specific song wise, I cannot give an affirmative “yes, I’ll sing it.”

      I can’t even read from my book without crying so… I would really love it if you wrote a song for me to sing but I may chicken out of it last minute because this is a part of my life that is quite difficult.

  4. Russ Rogers says:

    Today, I went looking for creative ways to raise money for Lupus. And I was reintroduced to the work of Julian Lennon through the song, “LUCY.” Initial profits from the song “LUCY” were generously donated to Lupus foundations in part to honor Julian’s childhood friend Lucy Vodden who had suffered from Lupus until her death in 2009. Lucy Vodden was the girl in Julian’s painting “Lucy in the Sky with Diamonds,” that had inspired the Beatles’ song.

    I think it’s poetic, ironic and moving that the psychedelic child of “Lucy in the Sky with Diamonds” would also have dealt with Lupus for much of her life.

    I’ve grown up with the Beatles music. It feels like part of my DNA. So I was wondering if folks would like to honor the memory of Lucy Vodden with songs, stories, graphic art inspired by the song “Lucy in the Sky with Diamonds”? Maybe “Lucy in the Sky with Butterflies”?

    • Jules says:

      It isn’t a bad idea Russ, however it isn’t really the point. I am not sure if you are aware of this or not, but I myself live with Lupus. I already have several fundraisers and if my aim was to raise funds for Lupus, I would be plugging my book and my merch as proceeds go to Lupus research and treatment.

      However, my aim in this is to raise awareness and not cash. As Lupus is an orphan disease, things like House jokes need to end and real awareness needs to take place if any strides are to be made in this area.

  5. JoAnn says:

    What about collecting butterflies made by people, trying to get 1000 of them in an act similar to the 1000 paper cranes idea for origami. I looked up origami butterflies and got this page-…. They say that if you fold 1000 origami cranes you will get your wish- maybe 1000 origami (and other media) butterflies will get more people aware of Lupus and the search for a cure for it. I can imagine an art gallery having a show of the collection, perhaps it being a traveling show as well. Maybe afterwards they can be sold to raise money for research. Butterfly music could be played during the show. I can put out a call to the crazy quilters, embroiderers and regular quilters groups that I am a part of for you if you would like, they are on line in google groups so there are a lot of possible connections. A butterfly quilt made of 12 donated blocks, each block different would probably auction off for a decent price as well.
    Probably not time enough for a quilt, but if everyone was to send in 10-20-however many you can make I can make a “curtain” of them for you to display. Basically, 100 strings with 100 butterflies each hung from a curtain rod. Do you want for me to string them or for them to go straight to you?
    Bet we could do a neat video of people folding and making butterflies, mailing them off, and opening and stringing them to the music produced for the day too! I don’t know how to do that- all the editing bits I mean, but can at least have someone film me making some or stringing them, and get the vid to whoever can edit it.

    • Jules says:

      Seriously excellent idea. Curtains work! And I can do any video editing stuff that needs to be done as long as it gets to me by the 8th. That leaves me two sleepless days to get any last minute media stuff done before the “big reveal” on the 10th.

      I’m planning to build a site in the next week to put all of these ideas together. People can add to them or sign up for one etc. And then on the 10th, I’ll reveal the results of all the efforts in a sort of virtual art gallery.

      This idea really makes me happy. Especially as I was thinking earlier today of a cross-stitch I could do for my own person project.

    • Jules says:

      Meant to add, as for the curtains, if you wouldn’t mind assembling them (if this pans out) I would great appreciate it!

  6. JoAnn says:

    OK, everyone can send them to me then- drop me a note to my email at and I will send you my mailing addy. If you take a video of yourself folding, painting, sculpting, sewing, etc your butterflies, send that to Jules.

    • Jules says:

      Thanks a lot JoAnn! In the meantime if you wouldn’t mind posting this blog in those groups which you referred to earlier, that would be awesome. And hopefully I will have a main page up and running in short order completely dedicated to this.