Prepared by Steve Weiss @scweiss2001
Twitter is a popular online tool that enables people to communicate and share information with the world. Twitter users write short updates of up to 140 characters in length, called “tweets,” that they post onto their Twitter profile.
Twitter users access information in two ways: 1) by “following” their friends or other people they are interested in, such as experts and celebrities (following someone means you automatically see their tweets when you sign on to Twitter), and 2) by searching for specific words or terms included in the tweets of anyone on Twitter.
In just a few years, Twitter has become a critically important online communications tool. Earlier this year, the site exceeded 200 million users, who tweet more than 110 million times per day. The site is used extensively by stars and athletes building their fan base, but it also a serious venue for the exchange of information and ideas among academics, journalists, activists, and experts on virtually every topic imaginable.
Twitter has enormous potential as a tool for raising awareness of CMT. A recent check showed that CMT is being mentioned in fewer than 5 tweets (out of 110 million!) per day. During CMT Awareness Month, people with CMT, their families, and friends can raise the volume by celebrating the event, educating others about the disease, and emphasizing the importance of CMT research.
To get involved, simply follow the following steps:
- 1.Visit www.twitter.com and set up a profile if you don’t already have one.
- 2.In the search box at the top of the page, type “CMTASTAR”. Under “People Results” you’ll see a link to the CMTA’s Twitter account. Click on it and choose to “follow” the CMTA.
- 3.Check out some of the people following and being followed by the CMTA. You may review their recent tweets and decide to follow them.
- 4.Type “Charcot” into the search box at the top of the page. This will list all recent tweets mentioning that word. Many, but not all, of them will have to do with CMT. You may choose to follow these people as well.
- 5.Click the “Home” button at the top of the page and post your own tweet into the box labeled “What’s happening?” Remember to limit your post to 140 characters – including any links to websites or articles that you may want to add. Below are some “tweet tips”.
- Think of your tweets as headlines or short notes to a friend – Make them topical, engaging, informative, and/or funny – most importantly, make them interesting. You may want to announce that it’s CMT Awareness Month, talk about life with CMT, offer a fact about the disease, link to an article about CMT, or urge support for CMT research.
- Use “hashtags” – A hashtag is simply the “#” symbol. When placed in a tweet immediately before a given word, it automatically makes that word searchable to Twitter users. For example, typing “#Charcot-Marie-Tooth” will cause Twitter to highlight the word “Charcot” and enable people reading your tweet to click on it and see other tweets that include the word. Manual searches can still be performed in the search box at the top of the page, but using hashtags makes it easier for people to search the word you suggest.
- Select hashtags carefully – Keep in mind that acronyms such as “CMT” can have multiple meanings. Searching for “CMT” on Twitter results in countless tweets mentioning Country Music Television and only a small number about Charcot-Marie-Tooth. Searching for CMTA reveals several organizations with that acronym. A better hashtag is #Charcot or #CMTASTAR.
- Feel free to “retweet” – Retweeting simply means that you are posting someone else’s tweet on your own Twitter account. If you like someone else’s tweet, “retweet” it so that your followers are sure to see it. Retweeting is easy – simply click on the retweet link that appears when you drag your mouse over the tweet of someone you are following.
Tweet Suggestions – Feel free to use (and reuse!) these suggested tweets during CMT Awareness Month. All meet the requirement of 140 characters or less:
- September is #Charcot-Marie Tooth Awareness Month! Find out more at http://www.wearethecmta.org
- #Charcot-Marie-Tooth is the most commonly inherited neuropathy, and Sept is CMT Awareness Month! Visit http://www.wearethecmta.org for more info
- 1 in 2500 people worldwide has #Charcot-Marie-Tooth disorder, which weakens one’s legs and arms. Find out about us @ http://www.wearethecmta.org
- #Charcot-Marie-Tooth was discovered in 1886 by Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth. Learn more @ http://www.wearethecmta.com
- The #Charcot-Marie-Tooth Assn @CMTASTAR formed in 1983 to find a cure, raise awareness, and improve the quality of life of people w/ CMT
- #Charcot-Marie-Tooth Awareness Month is generating support for the CMTA’s Strategy to Accelerate Research @CMTASTAR http://www.cmtausa.org
Global Support and Action Group Community,
CMTA Online Community
- September Action of the Month (cmtnyus.wordpress.com)