Stephen Covey once said,
“I am personally convinced that one person can be a change catalyst, a “transformer” in any situation, any organization. Such an individual is yeast that can leaven an entire loaf. It requires vision, initiative, patience, respect, persistence, courage, and faith to be a transforming leader.”
I have read a lot of blogs since I started my own blog on January 10th of this year. I have often been struck by…
the incredible challenges faced by so many individuals I now consider friends and family. In addition, it is amazing how many times I find someone (myself included) struggling to find purpose within the restrictions of these illnesses.
I think I may just have a solution for that.
Today, I would like to introduce you to a new organization that I have asked Jolene at Graceful Agony to help me run. It will be called, Invisible Awareness: “Raising CFIDS/M.E. Awareness one story at a time”. I have put together an over-view of what we are hoping to accomplish through this organization.
VISION:
- To raise awareness about the devastating affects of living with CFIDS/M.E. through the sharing of our collective testimonies (stories).
OBJECTIVES:
- First, to reach as wide an audience as possible with real life stories every month.
- Second, giving each individual suffering with CFIDS/M.E. the opportunity to take part in raising awareness, thus providing purpose.
- Third, to create an ongoing dialogue throughout the year that will culminate on May 12th each year – the National CFIDS/M.E. Awareness Day.
- Fourth, to provide a means for those individuals with CFIDS/M.E. to connect with other CFIDS/M.E. suffers in order to build a support network.
- Fifth, providing each and every individual suffering with CFIDS/M.E. a vehicle to have their voices and their stories heard.
- Sixth, creating a powerful voice that will be heard above the din of politics, greed, and unbelievers.
REQUIREMENTS:
- 1. An online organization with free membership.
- 2. Members will get a badge to put on their blogs indicating they are part of this organization/group.*If member does not have a blog, that will not prevent them from becoming a member.
- 3. Each member – when they are able – will be asked to post an article/post on their blogs on the 12th of each month, if they have their own blog or website.
- 4. Each member – when they are able – will be asked to periodically write a post/article of their personal story. Those without blogs can email them to Dominique or Jolene. Email will be provided at that time.
- 5. Each member – if they are able – will be asked to have a twitter account so they can tweet the monthly ‘story’ on the 12th of the month. Jolene has agreed to be the Twitter Assistant for those who need help. Jolene and I can help most people get a Twitter account. You do not need to have a blog. You will just have to come up with a name and password. Once the account is set up, you will be able to click on the tweet button on each blog that is carrying the story. It will really be that simple.
- 6. Each member – who so desires – will be added to the Invisible Awareness blog roll.
HOW IT WILL WORK:
Every month a different member will submit their personal story to Admin (Dominique) or the Editor (Jolene) via email. After editing, the article will be forwarded to all members to post on their personal blogs on the 12th of the month. Every month will showcase a different individual and story. Twitter, Facebook, Bloggers Unite and such will be used to spread the current “testimony”. To clarify, all CFIDS/ME/FMS bloggers will have the same post on the 12th of each month. This way, this one story will be read by a wider audience because we will all be working in concert to make it go viral.
Note: We will need all those who participate to provide their emails so we can send out the monthly story.
So … what do you think?
If you like this idea, I need you to do two things for me.
1. I need you to tweet this, Facebook this, Stumble this, whatever you have access to and are signed up to.
2. I need you to send this to every blogger who has CFIDS, M.E. so they are aware of what we are doing!
Jolene and I are looking forward to accomplishing great things with your help!
Determined to continue forward,
Youtube
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Digg
Delicious
Technorati
Twitter
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Facebook
Wow! What a fabulous idea! And how wonderful for you and Jolene to take it on!
My only concern would be with some of the requirements. I am more severely affected than most, of course, but I wonder if some of the requirements might be to much for some people, and thus keep them from participating at all. For example, I can hardly even handle Facebook (I can only read one or two status updates a day), and may have to stop being active on there at all….I’ve often considered closing my account because it just gets to be too much. So I don’t think I could handle Twitter.
I also have months where I am too sick even to email and have been known to have to take months away from blogging or being online at all. So I think being required to post on certain days or a certain amount per month may be hard for some. Or, at least for me. I’d have to skip out on participating if it was required. Perhaps you could use the word “urged” instead? That is, members are urged to write every month, urged to post on the 12th, etc. Just a thought! Otherwise, sounds great!
Laurel´s last [type] ..Determined Spirits
Laurel – Actually Laurel. All you would have to do is set up a Twitter account and then add it to your blog (or maybe have someone help you with that) and then it would only require hitting the tweet icon on the page. It can be set up automatically. It won’t keep people out of the membership if they can’t, it would just help it go viral if as many of us that can, do.
I totally understand that it might be more that you can do.
I will change that now. My military training I think! Urge is fine.
If the twitter account was set up for you, and an added to your feed, are you able to just click it on the page? The reason I ask – and added this requirement – is because I have the twitter icon on my blog and yet it is very rarely used. Is that too difficult for some to do?
Thanks, Dominique… I think I just got a little worried when I saw lots of “required”‘s in the original!
Blogging is such a huge task for me as I can only be online about an hour or so a day here and there, and type with my eyes closed… so it can take me weeks or even months to write just one little post sometimes. But I’m sure not many struggle with that as much as I do.
If I only have to add a Twitter icon to my blog and click here adn there, I’m sure that’s do-able!
Anyway, great ideas, Dominique!
Laurel´s last [type] ..Determined Spirits
Laurel – Thank you so much! I keep forgetting you have to type with your eyes closed! Phew! The fact you can do it at all is absolutely amazing!
On the Twitter thing, you will have to sign up. I can help you with that if you need me to. We will have to sign your blog up for an account/or other name. And then it gets added to your blog and then it really is click and go. That way you, when you visit the multiple blogs who have the same post, we will be twittering the article multiple times! Smart, huh! he he
Again, thank you so much for your insight. I so appreciate it. My military training tends to come out through words like “required” ! Yikes. Need to mellow out some, huh!
BTW, I’m going to leave your comment here so everyone knows that I am open to their insights as well. This isn’t all about me but about each and everyone who has CFIDS/ME/FMS.
Sounds very good and I pray
it will be very successful in
fighting our feelings of beng
invalidated even though research
validates us. I have the same
concerns as Laurel. I’m very limited.
Reading your Blog has been a great
support. I mostly go here and
e-mail with a few friends. I
actually now have a Face book page
but it really confuses me.
I would suggest for those of us
who are very limited in our computer
skills (and me limited in sitting
at the computer – nope I can’t
afford a light weight lap top)….
Trying to say I want to participate
in a VERY simplified way. What
would that be? Perhaps I could at
some point share my “story” in a
personal e-mail to you with my
permission to use however it would be helpful. I think that is what I
could commit to.
Patricia – Great ideas! Hadn’t thought of that. Okay. So we need to open it up to submissions for those without a blog. Done. And we need to provide one thing that people can do to help spread the word. Done. That would be Twitter. I can help you set up an account. Easy to do. I can even do it for you (we can talk about that later.)
Then all you would have to do is read the post/article of that month and click on the Twitter icon on whatever blog you are reading it on. Easy.
Thank you. Great suggestions.!
Thanks for including me and
I hope new people stumble onto
your Blog who like me would
love to be part of this in a
limited way – much better than
nothing. I liked the idea of something
ongoing that leads up to the annual
awareness day. Thank you for
offering to to the Twitter thing
for me. Do I understand I would read
a post/article of that month on
your blog and then click on the
Twitter icon – also on other blogs?
I wish some well people (relatives
and friends would get very
active in this and not leave it
up to us) I’m sure there are
but I just don’t know them.
Patricia – You got it right. That’s it. You just click on the tweet button. I have one on this post. You can try it now if you want.
How are you and Sammy doing today?
Dominique, Wow…I feel very old right now! I don’t know how to tweet or stumble. I need to learn all of this stuff! It sounds like a wondeful idea!
xomo
Mo´s last [type] ..Woe is Me
Mo – I am more than happy – as is Jolene – to ‘teach’ Mo. Don’t let that old saying, “you can’t teach an old horse new tricks” get you down! I know you can do it!
Thanks!
What a wonderful site this is going to be! It is a great thing to find life’s purpose in the midst of chronic illness and pain. I can’t wait to see what you both do with this. I love reading Graceful Agony and look forward to reading 4 walls and A View.
Thanks so much for being an inspiration!
Rosemary Lee
Rosemary Lee´s last [type] ..AWAKE AWAKE AWAKE
Rosemary – It’s wonderful to ‘meet’ you! If you are a friend of Jolene’s, you are most definitely a friend of mine. She is an absolute sweetheart! Thank you. I’m really glad you like the idea. I think it’s a God idea, to be honest. But I can really visualize the impact we could have with this. Our silence would now be heard in our collective voices. How powerful is that?!
I look forward to hearing your thoughts and getting to know you better in the days ahead.
Dominique,
I think this is a great idea. I tweet, facebook, stumbleupon and others as well. I can help anyone that may need assistance setting up a Twitter account. We all need the support so I am definately on board.
Michelle – A fellow stumbler! Woo Hoo! I don’t meet many of those here! Thank you!
…and you may already have this but if you do not:
http://www.addthis.com/services#cnt=30
it’s a great way to stay on top of services that are trending up and down.
Michelle – Thanks. Believe it or not, that part I am not very good at. I’m super good at twittering. I have 2 accounts. One with over 1,600 followers and one with 116 followers I just started with the blog. I think I’m going to add a third one for Invisible Awareness! I will bookmark that for future reference though. Thank you so much!
What are both your twitter names so I can find you?
Michelle – bygracenotmerit (mostly politics on this one) and 4wallsandaview.
What’s yours?
Fantastic idea!
I’ve just tweeted this and put it on my FB profile. I don’t have many “followers” on Twitter yet (I just started it in April when I started my blog), but am starting to put my news stories on there as well, so perhaps that will help. Plus, I’ve made one friend on Twitter who’s influencial in social media, and he’s got thousands of followers and he RTs all my stuff, so that’s groovy.
I’m on deadline for a news story due upcoming Wed., so I may post something new this wknd., as I’ve been too busy to attend to my blog while reporting (the story’s rather intense).
Anyway — again, I think your idea is a swell one, and I’d be happy to be a part of its start-up.
Best,
Amy
Amy Yannello´s last [type] ..Increasing your brain size, one + sign at a time
Amy – Thank you! Well, if this works out the way I think, you will LOTS of Twitters! I’m thinking of creating a Twitter Blog roll when we launch so we can find each other and follow each other. It will make it a LOT easier. Good luck on your story and deadline!
Great idea Dominique.
What exactly is requirement number 3? Just to write an article on ME/CFS on your blog on the 12th?
Johan´s last [type] ..Prof. Dr. Kenny De Meirleir And Himmunitas
Johan – Thank you! It basically means that each month – we are no longer sticking to the 12th – people thought that would be too difficult – one person will have their story (that they submitted earlier and was edited for typos and such) featured on the main website. A copy of that will then be posted on all the members sites on a specific day and then we will all tweet them on each others blog and the main site throughout that day. Simple but I think it will be affective.
My thinking is that we are hitting people up with too much diverse information so if we focus on one aspect – the personal story – and send it out over and over, then eventually people will start putting stories with CFIDS / M.E. and make the connection. I think our ‘stories’ hold the power to change people’s perspective of this illness.