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Team Spazz! (or I Have a Dream)

maux
  • By maux
  • Posted July 4, 2009 at 1:23 pm · 4 replies
  • Shared with the public
  • Edited July 21, 2009 at 11:02 pm
0 Recommendations

[edit: The discussion has moved to http://www.inspire.com/groups/rare-disease/journal/sps-fundraising-for-rese arch/] LADA folks wanted.

I have a dream: TEAM SPAZZ! Support for Stiff Man Syndrome.

Inspired by Betty-Oops and our mutual affection for..... shopping carts!

I can't help it, but I have a crazy idea. Let's start our own Stiff Man Foundation and instead of a bicycle race, we'll have a shopping cart race!

I am inspired by the "Red Riders" in The Race For the Cure. The Red Riders are the diabetics. The JDA now has races (or leisurely bike rides) all over the world. Inspiring!

My second inspiration is my own insanity and the fact that I'm a performance artist by trade. I think a bunch of disabled people pushing shopping carts could be hilarious, not to mention the fact that we would be ripping the hood off of our "invisible illness".

Thirdly, I'd like to meet my fellow SPS'ers. We need to join forces. The US gov't's clinical trials are a joke.

Most importantly: We need private funding.

We only need to get people to give us money to travel somewhere and make idiots of ourselves. (To start).

I am also inspired by contemporary protest tactics that have included a lot of theatricality. It gets the media's attention. Additionally, there's a shopping cart race that the artists do every year. I think it started in San Fran, based on an Inuit tradition of dog-sledding. (Or something like that.) Goofy gorilla art does not go after media attention but gets it nonetheless.

This is just an idea, but I'm putting it out there b/c it's stuck in my head. I can do initial PR. (We make enough money and we can hire a professional). I can find sponsors. (I think. I did it when I was funding theater projects in my pre-SMS years.) We can start small. We just need a game plan.

I wonder if there are any other SPS'ers who are willing to take on a such a big project, b/c it can't happen without at least 50% of us, minimally, "into the idea" if not willing/able to participate or get donors. Support for the idea should be enough impetus to get it off the ground.

Maybe we can include other NORDS, eg. Isaacs Syndrome and Sjorgens Syndrome. We are a DISEASE, not a syndrome and LOOKIE, we are also Real People. I am tired of being ignored and having IVIG (and other old pharamaceutical 'genius' ideas) being "tested" and then pushed on us. I've had this illness for ten years and nothing has changed but the number of google search hits for Stiff Man Syndrome.

I dream of a Daily News front page showing "SPazzerS make Noise in Times Square."

Of course, I'd want it here in NYC for the media coverage but that's where TEAM SPAZZ comes in. Some of you prolly can't handle travel and NY is not a very friendly place. Honestly, NYC people are wonderful but it's noisy and the actual city is demented at times. I'm just thinking a plane "hub" type place would be good (and less expensive for travel). Maybe I'm wrong and someone has a better place in mind. Centrally located. There are lots of us in the UK and Australia. I'm thinking we should meet up somewhere in the middle.

Hey. We'll invite the Parkinson folks (fellow spazzers:)) - even thought they already got mad press and have a disease that is not called a "syndrome". Maybe we can race the Parkinson folks. hum. Are there any famous people with our disease?

We are all winners. I'm not imagining a "real" race. We can have golf-type "handicaps" for those unable to walk and such and the idea of a person in a wheelchair pushing a shopping cart for fame and glory can not be imitated! Or ignored! It should be a day of fellowship and fun. Putting a face to disease that could use some genetic testing and research already. TYVM.

Even Sjorgens Syndrome is organized with real private research underway - if my memory is correct. We can help each other, one disease to another.

I am inspired by this site - Inspire.

NORD does nothing for me. Literally.

What do you think? anyone?

I posted this on Betty's page when she mentioned the shopping carts in her journal.

One last note: I googled Alpha One Syndrome that Michael Jackson was claimed to have had... (RIP, Micheal!) and found a pharma company doing genetic research. Never found anything like that for SPS. Tell me if someone is doing something and I'm unaware.....

Happy July 4th! Home with a sick roommate (chronic condition as well - hah!) We have to stick together. I do. That is my life. My work. My passion. Please join me.

*FYI: SPS and SMS are the same thing. I can't decide between Stiff Man and Stiff Person....

Stiff Man Syndrome is funny in and of itself. SMS ranks in the top ten of stupid disease names. I want to use that "gift" and get well.

Loving you all and thanks for the inspiration,

maux

Explore topics in this journal entry and replies:

Memory Diabetes

4 replies

SickOfBeingSick

Love your idea!

We could have races with motorized shopping carts for those who are unable to push a regular shopping cart. Maybe have an obstacle course. Some of the stores I have been in are very challenging obstacle courses if you are in a motorized cart! I've bumped more than a few store racks.

We could have teams for each of the rare illnesses on this site - problem being, some people would be on more than one team because they have more than one diagnosis, and other people might be on a team all by themselves!

I've spent quite a bit of time in Alaska. The dog-sled race you are thinking of is called the Iditarod and it's a really big deal in Alaska.

For people who have a service animal, we could have a cart-pulling race.

I bet we could get lots of media attention! Why should only the rare illnesses with a celebrity poster child get all the media attention?!?

Do you think if we did it at a professional horse racing track or on an Indian reservation that we could legally take bets and use the profits for research and treatment?

Cathy

maux

We got one! I was thinking of the southwest/US last night. Betting is legal in Nevada, right? How about Las Vegas? Of course, I was thinking more along the lines of Roswell New Mexico for an extra dose of insanity.... ! Make a fake (or real - depending on your view) ceremony asking the aliens to help us. (Enter the stars for the performance that could raise money as well.) Of course, a post-race concert would be better in a city where folks (and the famous musicians and comics) live. Bringing me back to my hometown. Or LA? But celeb attention overshadows everything in that town. I am suddenly aware of the fact that I want it here b/c I know the "system." Alright then.

Yay! Great ideas from Cathy... Bring Em ON! now what? I was thinking of doing the traditional sort of "sponsor a rider" like the JDA does, but betting takes it to a new level of "challenge". I wonder if there's a loophole for betting for a 501c(3) organization.

Maybe I should get on the non-profit app this week.

I would like to stick to Stiff Man for starters and build a model for other Orphan Diseases to follow. As I help with the MDA Walk and the sponsor riders for JDA, I suspect other fellow orphan disease sufferers will support a Stiff Man Celebration Foundation Team Spazz Race. But that's all up to fate right now. I am thinking of Marie- ?? syndrome now.... We are so numerous in disease names but similar in frustration.

I am really curious as to whether there is any private research going on that I am unaware of...

Also Times Square was recently redesigned for more foot traffic and my little brain wants to be the first to jump on it as a "performance space" - the heart of Broadway, tourists from all over the world... Get one of the hotels to sponsor us. Broadway stars, movie/tv stars, Bruce Springsteen!! - hey a girl can dream!

maux

The discussion has moved to http://www.inspire.com/groups/rare-disease/journal/sps-fundraising-for-rese arch/

Looking for LADA folk input. We are thinking of researching anti-GAD antibodies.

maux

Dear Ainslee,

Ainslee. You'll love this. I once got into an online debate with a bunch of student yogis at yoga.com because they couldn't understand the word, "syndrome." "It's not a disease...." I studied yoga in the early nineties before it became fashionable and wasn't filled with idiots who call themselves teachers. My Yogi, Ananda B, loved the way I would roll around into full lotus, since I can't sit straight. Said I taught him thing or 2!. TYVM.

Let's get Facebook rockin - for now. Good God, I forgot to join. Done.

I saw you commented on this thread: http://www.inspire.com/groups/rare-disease/discussion/sps-and-rimuxitab/

Tina recently mentioned this in a reply to a fellow Australian (with Issac's Syndrome - what a mensch!): * BravesLover
* Posted August 27, 2009 at 12:18 pm
Thanks for your reply. I hope I get approved for it. I go see my neuro on Monday the 31st. I have a real good friend who lives in Bonville, NSW who has sps real bad. We met on this site and have become best friends, I could send you her email address if you would like it. She likes to talk to anyone with a rare disease. She is out of her house right now because they have a creek that runs behind it and when you guys had all the flooding up north earlier this year, the creek overflowed and flooded their house and they are trying to get it fixed and get back into it. Hopefully soon they have been out of it since back in May and I cannot email her until she gets back and gets her computer up and running so we have just been sending letters. Well best of luck to you. I hope you get better. Tina Morrow


Can we use your Facebook page to get Tina's friend some moolah for a computer? We might as well start (really small) by helping out our fellows.

Then we move on to research! I would love input from folks from other countries here! Esp, Israel, since we are so connected by our "sick" gov't/private medical biz. (I just got a trial pump by a company there.)

At this point, I really want to know more about the Anti-GAD antibodies and wonder why most people with autoimmune diabetes don't get SPS. Perhaps, because they are usually actual juveniles? I got diabetes after SPS. I recognize my selfishish in this angle. I remember that I am no scientist. That's why an SPS collection of specialists is needed so much. Ethical question #2: Would we be excluding people without elevated titers if we focus on the antibody? We need a lot more physicians and researchers on board. So far, we got Steve's doc.

But Team Spazz can be more that just research. We could try a little pool of slush money for SPS'ers in in financial crisis. (Kind like my actors union who threw me some cash when i got sick.)

i m grateful to NORD for bringing us together and keeping awareness alive. But Team SpaZZ is about helping one another, not just grants!

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