August 2012 CMT Community Newsletter

Dear Friends and Family of CMT,

Author and story-teller Malcolm Gladwell wrote on his bestseller The Tipping Point: How Little Things Can Make A Difference: “The tipping point is that magic moment when an idea, trend, or social behavior crosses a threshold, tips, and spreads like wildfire.”

The idea to build support communities such as LivingwithCMT was born out of necessity, passion and interest for rare disease patients. But there is still a lot to cover before that idea “spreads like wildfire” or realize a magical moment which will bring our plight across the threshold to the mainstream.

How can we speed it up?

Gladwell offers three keys in the book. First, he wrote about The Law of the Few. "Economists often talk about the 80/20 Principle, which is the idea that in any situation roughly 80 percent of the “work” will be done by 20 percent of the participants," he wrote. We may be few right now, but well placed words (through social networks, blogs and comments on articles online) move us a nudge closer to the tipping point.

Second is The Stickiness Factor. “The hard part of communication is often figuring out how to make sure a message doesn’t go in one ear and out the other. Stickiness means that a message makes an impact. You can’t get it out of your head. It sticks in your memory.” How do we do it?

With meaningful, easy-to-read but hard-to-forget stories and discussion topics. I’ll share you some examples on this newsletter below.

Third is The Power of Context. Gladwell cited a social experiment where a student stages an epileptic fit. “When there was just one person next door, listening, that person rushed to the student’s aid 85 percent of the time. But when subjects thought that there were four others also overhearing the seizure, they came to the student’s aid only 31 percent of the time.” The same behavior occurs to people who saw smoke seeping out from under a doorway. They “would report it 75 percent of the time when they were on their own, but the incident would be reported only 38 percent of the time when they were in a group. When people are in a group, in other words, responsibility for acting is diffused… The key to getting people to change their behavior … sometimes lies with the smallest details of their immediate situation.”

To make those in mainstream society understand and act on the plight of rare disease patients calls for involvement. And we do that by inviting them over to our community.

IN THIS ISSUE


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Welcome New Members

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

A New Milestone: 20,000 Members Strong!

Network-wide Survey

Twitter Chat

CMT COMMUNITY HIGHLIGHTS

Featured Content

Featured Member

Picture of the Month

Community Stats

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Welcome New Members

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As you can see, our LivingwithCMT is sincere in its interest in providing you not only with emotional support and information but in finding practical help as well. Check out our FREE 2nd.MD and Advocacy for Patients initiatives. Increase your visibility by participating actively, throwing your most nagging questions on the discussion page. Update everyone by posting blogs, sharing pictures and linking to your Facebook, Twitter, Tumblr and Pinterest accounts, or whatever social network you subscribe to.

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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A New Milestone: 20,000 Members Strong!

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Ben’s Friends Patient Support Communities surpassed the 20,000 members mark—a new milestone! But here is more. Our numbers show over 120,000 visits to our sites, indicating a huge potential for future growth.

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Network-wide Survey

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Here are some results of July’s BF-network wide survey.

A total of 528 members responded to the question “What do you like most about the community?” Some members’ responses may fall into multiple categories but the overall result is not affected.

People and Connection – We half-expected the top answer would mostly be about people but now it can be told: it is the support, understanding and connectivity that members really appreciate the most in their community sites, with 72% saying so.

Information and Site Content – 28% of the respondents say that the communities provide the information they need to cope, respond to and share with their healthcare providers.

Site, Technical Features – The website design and features, the email and newsletter features, as well as “ease of access” and “navigation”, “24-hour” availability, even the “layout” and the level of participation, were liked by members too.

We will be sharing more results of the survey next time.

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Twitter Chat

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After three successful Chat sessions since last month, the next round of our Twitter Chat is scheduled on Sunday, Aug 26 at 11am Pacific time/2pmEastern/7pm UK time. The goal of the Twitter Chat is to learn from each other regardless of one’s condition and encourage as much involvement across all of the 20,000+ members across Ben’s Friends 30+ rare disease communities.

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CMT COMMUNITY HIGHLIGHTS

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Featured Content: Miss USA Outstanding Teen Contestant to Raise Awareness for Charcot Marie Tooth

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Armando finds Amy de Silva, New Bedford's Miss Outstanding Teen for 2012, who is vying for the title Miss America's Outstanding Teen 2012. What's so special about her? Amy joined the pageant to raise CMT awareness, an illness she is suffering with.

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Featured Member: Debbie Murphy

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Debbie Murphy of Saint Louis, MO co-moderates Living with CMT site, which she joined in 2010 as her father is a CMT patient.

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Picture of the Month

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JC Colyer's pic is our hands down featured photo of the month!

"Never Give Up on Anything"

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Community Stats:

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Number of Members as of August 1,2012 : 117

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Our community is slowly but surely gaining exposure. Let us be on it without let up. Eventually, we will reach that critical point when it will be difficult to ignore our call.

With your active participation, we can reach the tipping point and put the weight on our side.

Cheers!

Ben