I spent some time today catching up on twitter. I highly recommend TweetDeck, by the way. It's so much easier to manage tweets with it.
As I was getting caught up on twitter, I was messaging various people I encountered, asking them to sign our endometriosis petition.
It occurred to me that I hadn't asked steveweber to support our cause. For those of you who aren't familiar with him, he is what I call a "twitter guru". Check out his twitter page and you see 21,175! When I first installed TweetDeck, he was very helpful!
Thank you to steveweber for retweeting #endo messages!!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Showing posts with label #endo. Show all posts
Showing posts with label #endo. Show all posts
3/14/2009
3/05/2009
"Jeanne's Endo Blog": Endometriosis Is More Common Than AIDS & More Common Than Cancer! Harnessing The Power Of Twitter For Endometriosis Awareness..
Normally I step aside of "Mom or Mommy groups". I'm well aware that too many endometriosis patients (or other infertility patients) are unable to become mothers and I am very sensitive to this. However, I decided to break my own rules about this for the endo cause. I saw an opportunity to join an online twitter community of over 5,000 women and realized that I'd be foolish not to join/request members' help getting the word out about endometriosis simply because it is a club for moms. So I hope none of my readers will be offended that I've joined a "Mom Club"... because the thought I had in my head when joining this social networking group was that it would be a good place to network with women to HELP endo patients.
Maybe the group can help the twitter campaign we're doing to promote endometriosis awareness? Maybe some of the members of the group might even retweet our endometriosis messages regarding blog posts, general awareness messages, or even sign our endometriosis awareness petition? Once I joined, I discovered that I could post a blog entry right from my TwitterMoms page. So that's exactly what I just did.
In an effort to further harness the power of ever-expanding twitter, I joined this group that has 5,000+ members and posted a blog post on this social network... for the purpose of requesting members' help with retweeting our endometriosis-related tweets. Here is an article about the TwitterMoms group: Redbook: What's Buzzing on the Net: TwitterMoms.
My blog post on 5,000+ member TwitterMoms
Here is what I posted there:
March is Endometriosis Awareness Month!
Endometriosis affects 89 million women and girls worldwide.
Endometriosis is more common than AIDS and more common than cancer, per the Ohio State University Medical Center!
Source for above statement:
Ohio State University Medical Center
Twitter page: @jeanneendo
Sign here:
Endometriosis Awareness Petition
We currently have an aggressive twitter campaign to tweet endometriosis-related messages with a special hashtag at the end of the messages:
#endo
The #endo hashtag is now in the hashdictionary and it is being used daily by many twitter users.
Won't you join us in supporting endometriosis awareness by simply retweeting #endo tweets??
By the way, anyone who'd like to post the endo awareness petition link is welcome to do so!! Help yourself (link above)... By simply posting this link, you can help with endometriosis awareness in just a few moments' time!
In the end, I think I made the right decision to join this group because I am now doing further networking for the endo cause. I even found a very nice news writer in the group and exchanged messages with her regarding endometriosis in the media!
Let's do whatever we can to get accurate information to the public. Inaccurate articles cannot stand unchallenged. We can't allow myths about endometriosis to keep being spread. We need to keep speaking up about the facts regarding endometriosis.
Right now, sadly, the facts are not always pretty. We're dealing with an illness that is more common than AIDS and more common than cancer. It affects 89 million women and girls. There is a massive delay from onset of symptoms to diagnosis for most patients (an average of 9.9 years of delay). Even doctors have been known to describe it is "poorly understood" and "mysterious".
There is good news too! There is hope...
Awareness IS increasing (even in just the last few days that buzz is in the air), media reports are getting corrected, patients are speaking up more, research is being done (even if it's not as much as we'd like), girls are getting diagnosed younger... So the news is not all bad and we all have the power to do our small part to make things better for ourselves, each other, those who have endo but are not yet diagnosed, and future endometriosis patients.
In mid-March, CureTogether will release its book "Endometriosis Heroes". Now when is the last time you heard a new endometriosis book was being released? Pretty cool, huh?
MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS
P.S. Today is Friday... Twitter users, please don't forget to participate in Follow Friday! Simply send a tweet with the twitter addresses of those you recommend following. I sent several #followfriday tweets out this morning. Here's an example of one I sent...
I take that back! Wow! I just did a search on #followfriday tweets and after going back FIFTY screens I only got back to 24 minutes ago! I did my #followfriday tweets about 30 minutes ago and I'm too tired to keep searching! So if you have any questions about how to do #followfriday tweets, please just let me know. Can you imagine there are 50 screens full of tweets for #followfriday in just 24 minutes!!! That's how big it is. I have had people find my blog after seeing it on #followfriday so I think we should take advantage of it.
By all accounts, #followfriday is a HUGE trend on twitter right now, generating lots of traffic. Let's use it for endometriosis awareness! Plug your favorite endo bloggers. Plug a favorite endometriosis-related post. Send tweets to direct twitter users to endo info they might not see otherwise. Twitter has millions of users. Let's get their attention!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Maybe the group can help the twitter campaign we're doing to promote endometriosis awareness? Maybe some of the members of the group might even retweet our endometriosis messages regarding blog posts, general awareness messages, or even sign our endometriosis awareness petition? Once I joined, I discovered that I could post a blog entry right from my TwitterMoms page. So that's exactly what I just did.
In an effort to further harness the power of ever-expanding twitter, I joined this group that has 5,000+ members and posted a blog post on this social network... for the purpose of requesting members' help with retweeting our endometriosis-related tweets. Here is an article about the TwitterMoms group: Redbook: What's Buzzing on the Net: TwitterMoms.
My blog post on 5,000+ member TwitterMoms
Here is what I posted there:
March is Endometriosis Awareness Month!
Endometriosis affects 89 million women and girls worldwide.
Endometriosis is more common than AIDS and more common than cancer, per the Ohio State University Medical Center!
Source for above statement:
Ohio State University Medical Center
Twitter page: @jeanneendo
Sign here:
Endometriosis Awareness Petition
We currently have an aggressive twitter campaign to tweet endometriosis-related messages with a special hashtag at the end of the messages:
#endo
The #endo hashtag is now in the hashdictionary and it is being used daily by many twitter users.
Won't you join us in supporting endometriosis awareness by simply retweeting #endo tweets??
By the way, anyone who'd like to post the endo awareness petition link is welcome to do so!! Help yourself (link above)... By simply posting this link, you can help with endometriosis awareness in just a few moments' time!In the end, I think I made the right decision to join this group because I am now doing further networking for the endo cause. I even found a very nice news writer in the group and exchanged messages with her regarding endometriosis in the media!
Let's do whatever we can to get accurate information to the public. Inaccurate articles cannot stand unchallenged. We can't allow myths about endometriosis to keep being spread. We need to keep speaking up about the facts regarding endometriosis.
Right now, sadly, the facts are not always pretty. We're dealing with an illness that is more common than AIDS and more common than cancer. It affects 89 million women and girls. There is a massive delay from onset of symptoms to diagnosis for most patients (an average of 9.9 years of delay). Even doctors have been known to describe it is "poorly understood" and "mysterious".
There is good news too! There is hope...
Awareness IS increasing (even in just the last few days that buzz is in the air), media reports are getting corrected, patients are speaking up more, research is being done (even if it's not as much as we'd like), girls are getting diagnosed younger... So the news is not all bad and we all have the power to do our small part to make things better for ourselves, each other, those who have endo but are not yet diagnosed, and future endometriosis patients.
In mid-March, CureTogether will release its book "Endometriosis Heroes". Now when is the last time you heard a new endometriosis book was being released? Pretty cool, huh?
MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS
P.S. Today is Friday... Twitter users, please don't forget to participate in Follow Friday! Simply send a tweet with the twitter addresses of those you recommend following. I sent several #followfriday tweets out this morning. Here's an example of one I sent...
I take that back! Wow! I just did a search on #followfriday tweets and after going back FIFTY screens I only got back to 24 minutes ago! I did my #followfriday tweets about 30 minutes ago and I'm too tired to keep searching! So if you have any questions about how to do #followfriday tweets, please just let me know. Can you imagine there are 50 screens full of tweets for #followfriday in just 24 minutes!!! That's how big it is. I have had people find my blog after seeing it on #followfriday so I think we should take advantage of it.
By all accounts, #followfriday is a HUGE trend on twitter right now, generating lots of traffic. Let's use it for endometriosis awareness! Plug your favorite endo bloggers. Plug a favorite endometriosis-related post. Send tweets to direct twitter users to endo info they might not see otherwise. Twitter has millions of users. Let's get their attention!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
3/04/2009
'Jeanne's Endo Blog': Endochick's Campaign To Get Julia Roy To Feature #endo On TweetWeek
The beginning portion of this blog post is reprinted with permission from Endochick...
If you aren’t following @juliaroy on Twitter, here’s why you should be...
Endochick recently informed me that Julia Roy hosts a show called TweetWeek.
1) She is the host of the YouTube show Tweetweek. The February 18th Tweetweek has had 2,501 viewers. With her Tweetweeks, she goes through the popular hash tags and events covered on Twitter during the week.
2) She is the self-proclaimed “an entirely digital girl.”
3) She has, as of the writing of this post, 17,378 followers! This is a staggering number!
4) To raise money for Twestival’s Charity: Water, Julia Roy auctioned off an evening of drinks and dinner with herself. The final bid was $1,549.00!!!
5) If we can all follow her this month on Twitter, and then DM (direct message) her and politely ask her to cover the #endo hash tag for National Endometriosis Awareness Month, we may see this happen.
The more we use that #endo, the more popularity it’s going to gain this month! Keep encouraging other women you know to use it! The more awareness we can bring to this disease the better!
In addition to following and direct messaging Julia Roy, there is another powerful twitter tool we need to be using:
#followfriday
According to Mr. Tweet, #followfriday is the biggest trend, by far, with twitter hashtags at this time.
Here's the kicker. Few people seem to be following the "rules" and using #followfriday just on Fridays! In fact, since I installed TweetDeck, I see #followfriday tweets popping in all day, every day. Today, I saw a tweet where the woman (SerendipityJane) came out and acknowledged that she was purposely not following the Friday "rule". So, I'm figuring, why should we be the one ones following the "rules" and waiting until Friday?
So I just sent this tweet and I'll post it here as an example:
@SerendipityJane Jane inspired me to break rules. Here's who I'd love ppl to follow: @endochick @momtojake @jeanneendo #endo #followfriday
@endochick is Endochick
@momtojake is Melissa Ralston
So if you have twitter, doing Follow Friday is very easy. Simply write a tweet listing the people you want others to follow. (The people you listed need to be on twitter and you listed them by their twitter name, as I did above). That's it. That will direct traffic to those bloggers. Think of it like a "referral".
OK. Let's get twittering! Don't forget to mark endometriosis-related tweets with #endo!
*MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS*
UPDATED:
I just posted this comment on Endochick's blog post about Julia Roy:
Endochick,
I just emailed Julia Roy and copied you on it!
Her email address is:
julia@undercurrent.com
Her blog is:
http://www.juliaroy.com/
I just posted a comment on her last Tweet Week post! There was no comment moderation... it posted immediately. So even if she doesn't mention #endo on her next Tweet Week, we may get some decent visibility simply from readers of her blog looking at the comments!
Here was my email to Julia Roy:
Dear Julia,
I am one of the 89 million women and girls affected by endometriosis.
Endometriosis is more common than AIDS and cancer!!
(Source: Ohio State University Medical Center)
In late February, I posted my 2nd video. In it, I asked people to use this hashtag for all endometriosis-related tweets:
#endo
It has really caught on and many people are using it now.
March is Endometriosis Awareness Month. My fellow endo bloggers/patients and I desperately want to increase awareness about this serious illness!!
My endo started at age 13. Currently I’m 40. So I’ve been living with endometriosis for 27 years.
My friend and fellow blogger Endochick, of Endometriosis: The Silent Life Sentence was the one who told me about your show.
We would be ecstatic if you could feature this:
#endo
...on your Tweet Week show!
Endometriosis Awareness Petition
We have hundreds of signatures... many with heartbreaking comments...
Thank you SO much for considering featuring #endo on your show. Endometriosis affects SO many but does NOT receive the attention it needs and deserves! So many women and girls are suffering in silence.
Please help us educate the public and connect women to their fellow patients!
This is one of the messages we’ve been tweeting quite a bit: “MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS #endo PLEASE RETWEET!”
We appreciate your help!
Jeanne
Finally, here is what I posted on Julia Roy's blog about our wish to have #endo featured on her Tweet Week:
Blog comment response to Tweet Week - Episode 13
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Are you on Twitter?
Have you heard of Julia Roy???
If you aren’t following @juliaroy on Twitter, here’s why you should be...
Endochick recently informed me that Julia Roy hosts a show called TweetWeek.
1) She is the host of the YouTube show Tweetweek. The February 18th Tweetweek has had 2,501 viewers. With her Tweetweeks, she goes through the popular hash tags and events covered on Twitter during the week.
2) She is the self-proclaimed “an entirely digital girl.”
3) She has, as of the writing of this post, 17,378 followers! This is a staggering number!
4) To raise money for Twestival’s Charity: Water, Julia Roy auctioned off an evening of drinks and dinner with herself. The final bid was $1,549.00!!!
5) If we can all follow her this month on Twitter, and then DM (direct message) her and politely ask her to cover the #endo hash tag for National Endometriosis Awareness Month, we may see this happen.
The more we use that #endo, the more popularity it’s going to gain this month! Keep encouraging other women you know to use it! The more awareness we can bring to this disease the better!
Here is the comment I posted to Endochick's post:
Endochick,
Thank you so much for finding Julia Roy! As we discussed the other day, we should direct message her with requests to cover #endo on her show. The #endo twitter hashtag is really catching on and is now listed in the hashdictionary, thanks to Debby Bruck of Holistic Twitter.
If we spread the word to our endo sisters and enough people send messages to Julia Roy, we can make this happen. We have to get as many people as possible to message her, though, because she has LOTS of followers!
So we need to get the word out to other endo bloggers and endo patients AND ANYONE who supports the endo cause! Getting #endo featured on Julia Roy's show could really be huge for increasing awareness. With all of these coordinated efforts, something is going to pay off! We all just need to be determined and persistent!
THANK YOU! Now let's spread the word... email, Facebook, other endo blogs (comments), etc. We need help! We need more people messaging her. You and I have already sent her tweet messages... and we can do so again. However, we need others to join us.
In addition to following and direct messaging Julia Roy, there is another powerful twitter tool we need to be using:
#followfriday
According to Mr. Tweet, #followfriday is the biggest trend, by far, with twitter hashtags at this time.
Here's the kicker. Few people seem to be following the "rules" and using #followfriday just on Fridays! In fact, since I installed TweetDeck, I see #followfriday tweets popping in all day, every day. Today, I saw a tweet where the woman (SerendipityJane) came out and acknowledged that she was purposely not following the Friday "rule". So, I'm figuring, why should we be the one ones following the "rules" and waiting until Friday?
So I just sent this tweet and I'll post it here as an example:
@SerendipityJane Jane inspired me to break rules. Here's who I'd love ppl to follow: @endochick @momtojake @jeanneendo #endo #followfriday
@endochick is Endochick
@momtojake is Melissa Ralston
So if you have twitter, doing Follow Friday is very easy. Simply write a tweet listing the people you want others to follow. (The people you listed need to be on twitter and you listed them by their twitter name, as I did above). That's it. That will direct traffic to those bloggers. Think of it like a "referral".
OK. Let's get twittering! Don't forget to mark endometriosis-related tweets with #endo!
*MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS*
UPDATED:
I just posted this comment on Endochick's blog post about Julia Roy:
Endochick,
I just emailed Julia Roy and copied you on it!
Her email address is:
julia@undercurrent.com
Her blog is:
http://www.juliaroy.com/
I just posted a comment on her last Tweet Week post! There was no comment moderation... it posted immediately. So even if she doesn't mention #endo on her next Tweet Week, we may get some decent visibility simply from readers of her blog looking at the comments!
Here was my email to Julia Roy:
Dear Julia,
I am one of the 89 million women and girls affected by endometriosis.
Endometriosis is more common than AIDS and cancer!!
(Source: Ohio State University Medical Center)
In late February, I posted my 2nd video. In it, I asked people to use this hashtag for all endometriosis-related tweets:
#endo
It has really caught on and many people are using it now.
March is Endometriosis Awareness Month. My fellow endo bloggers/patients and I desperately want to increase awareness about this serious illness!!
My endo started at age 13. Currently I’m 40. So I’ve been living with endometriosis for 27 years.
My friend and fellow blogger Endochick, of Endometriosis: The Silent Life Sentence was the one who told me about your show.
We would be ecstatic if you could feature this:
#endo
...on your Tweet Week show!
Endometriosis Awareness Petition
We have hundreds of signatures... many with heartbreaking comments...
Thank you SO much for considering featuring #endo on your show. Endometriosis affects SO many but does NOT receive the attention it needs and deserves! So many women and girls are suffering in silence.
Please help us educate the public and connect women to their fellow patients!
This is one of the messages we’ve been tweeting quite a bit: “MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS #endo PLEASE RETWEET!”
We appreciate your help!
Jeanne
Finally, here is what I posted on Julia Roy's blog about our wish to have #endo featured on her Tweet Week:
Blog comment response to Tweet Week - Episode 13
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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