The Power of Us. We’re going to make Scleroderma trend world-wide on Twitter.

Even crazier, we are going to do this without spending a single cent.


Scleroderma will trend on Twitter world-wide, June 3, 2013, not by tweeting the same thing over and over.  We will do it with tweets, retweets and modified tweets.  This is the campaign I am  proposing.  This is not my campaign.   This is OUR campaign.  This is a world-wide campaign.  When I refer to us, I mean we, Planet Earth.

The trend will be #scleroderma, but there are many associated conditions I am asking that we all unite to encourage patients to reach outside the parameters of their diagnosis for information.

For example: Lets say you are diagnosed with Lupus.  You find that you are short of breath and your fingers are getting numb for no reason.  There may be a secondary diagnosis that could lead to effective treatment, but maybe you live in an area and don’t have access to specialists familiar with  associated conditions.  Symptoms are written off as just “part of your Lupus”, but there may be treatment used for other conditions that may help these symptoms.  What I am trying to say is that we need to change treatment of these diseases to follow the route of progression of symptoms, not the parameters that confine us by diagnosis (For God’s same someone please comment and let me know if this makes sense.  I’m working without a net here.  Thanks!)

You’ve read this far, so I’m going to assume that you are in.  If not, allow me to apply the “Peter Griffin Persuasion” :
Come on!  Come On!

Okay, good.  Moving on…


This campaign will have a consistent message of awareness, education and humor.  Here are suggested ideas:

1.  Facts about scleroderma.

2.  Funny anecdotes of observations by those touched by scleroderma.

3.  Memorial tweets always encouraged.  Share a happy memory of someone you lost to scleroderma.

4.  Pictures from walks or fundraisers.

5.  Retweets and Modified Tweets of facts, information or funny stories.

6.  Be positive.
Avoid posts like: “Scleroderma sucks, it kills people”, or  “Scleroderma is a slow, painful disfiguring death.”  We already know this.  Let’s get the facts out in a positive way.   There is no argument those quotes are true, but by staying positive, we inspire and educate.  Yes, scleroderma is scary, but sceroderma patients are not alone.  Let’s not teach with fear.

7.  Do not tweet to celebrities or anyone in a spam-like manner. (edited 5/4/13)
If you have a celebrity you hope will participate, try a friendly email and ask them.  (You know, If I could get a celebrity to comment on this, that would be awesome.)  Celebrities are people who receive hundreds of tweets a day asking for help with causes.  A friendly email is a more personal way to ask.  An email will put a face on your cause.  And if you receive no response, do not shame the celebrity.  Please.  I know many people will tweet friendly, but I want to just set some guidelines. I have seen some weird stuff on Twitter.

8.  Don’t tweet the same tweet over and over.
Yes, getting Scleroderma to trend worldwide is all about numbers, but the purpose of getting scleroderma to trend is raising awareness and education.  Let’s make every tweet count.  Yes, numbers help, but getting just one person to read our tweet helps educate about scleroderma.  In short: Numbers good.  Education better.


June is Scleroderma Awareness Month.  This Tweeting Event on June 3 is to get everyone in on it.  non-profits need to compete for funds.  It’s not a bad thing, it just is.  Because non-profits can’t always work with other non-profits to share information having this open event benefitting no one organization makes everyone “Free to move about.”

Shall we give it a Name?

Twitter is like a giant sandbox where the whole world is welcome to play.  So, Let’s Play in the Sandbox for Scleroderma.  It doesn’t matter what your diagnosis is.  Breakthroughs in research benefit all chronic illnesses, deadly diseases and ways of caregiving.  After June 4, 2013 if others find this model adaptable to their cause, I hope they will use it.  This is a project does not belong to The Mighty Turtle.  It is for us all because we are in this together, and together we are stronger.

You don’t have to join to participate, but if you wish join the event, here it is on Facebook, or ask to be added to the group Let’s Play! on Twitter.

So, If you skipped to the end:

Tweet any time between 12am,  & 11:59 June 3, 2013 Pacific time.  Tweet as often or as little as you like, something relevant with #scleroderma in it.  Let’s Play in The Sandbox For Scleroderma and get #Scleroderma to trend WORLD WIDE on Twitter.  I will be posting tweets about scleroderma every 10 minutes- maybe faster depending on if I can stay out of “Twitter Jail”.  RT what I tweet or tweet your own story, picture or whatever with the hashtag #scleroderma.  If you don’t tweet you can be a great help by  sharing this on FB before and the day of the event.

Remember:  Do NOT tweet celebrities and keep it positive.  No money will be spent to advertise this event.  Period.  We can do this with the power of us.  Let’s set the trend June 3, 2012.

We can be the difference by wearing a T-shirt during a run or with one tweet. This is The Power of Us. We will never know the true reach of a simple gesture that can mean the world to another.