Catch the Wave: 3rd Annual Detroit Hydrocephalus WALK (Part II)

Note From Peg:

The following post, by Jennifer Bechard (available at, is the second of a two-part series on the Detroit Hydrocephalus WALK. Jenn is Co-Chair of the Detroit Hydrocephalus WALK and also suffers from hydrocephalus. She first guest-blogged here in the June post, Social Media for Good: Jennifer Bechard on the Detroit Hydrocephalus WALK. For more information on Jennifer, see her personal story at Gabriel’s Life, or her own newly launched blog, Just Believe.

For more information on hydrocephalus, see the Hydrocephalus Association. (Please also consider voting for the Hydrocephalus Association, at Intel’s Vote for a Cause Competition, one vote per day, on Facebook.) Other resources and fundraising sites are located under “Related Links,” at the conclusion of this post.

In her original guest-post, Jenn helped kick off this Live with Abundance series, which focuses on using social media for good. In that first post, Jennifer’s goal was to raise awareness and funds for hydrocephalus, which significantly impacts the quality of life, of over one million Americans alone. Here, Jennifer continues to describe how 343 people turned out on August 2nd to walk for a cure as well as some of her own goals for continuing to make a difference.

And now, in her own words, the second part of Jennifer’s follow-up on the 3rd Annual Detroit Hydrocephalus WALK…

This past year, I felt I needed to take a more active role in promoting advocacy and sharing my personal experiences, to show others that current treatment is not acceptable. It is necessary that people throughout the United States become more aware of hydrocephalus and the long-term effects this condition has on a person’s life.

Educating Others on Current Treatment: “Hakim” Programmable Shunt by Johnson & Johnson Codman

One aspect people loved the most about the WALK was the Johnson & Johnson Codman table, which Sybrina Evans, a shunt rep for Codman, was hosting. In 1998, Codman introduced the “Hakim” programmable shunt and since that time, it has emerged to become the number one-selling CNS shunt in treatment of adult hydrocephalus, also known as NPH. Sybrina’s table consisted of the shunt tubing, several valves, the magnetic metos changer, a model of the brain, and a model showing the bur hole drilled into the skull, when inserting a shunt. It was a hands-on experience that was extremely educational. People were able to see what was actually keeping many of us alive. But this unreliable tubing also showed people the reason why many of us are not able to live a fully productive and successful life.

Raising Needed Funds and Supporting Each Other

Overall, we brought in almost $24,000.00, with more donations coming in! Throughout the past three years, we have raised more than $48,000! We have formed a lifelong bond with those affected and found a new source of support for the trials hydrocephalus will continue to bring.

Using Social Media to Spread the Word and Build Community

Our WALK seems to be growing bigger each year, and a lot of this has been because of social media. If it weren’t for my Twitter account, I would have never been able to advertise, as I did this past year for our event. The Internet was our source of spreading the word and bringing in donations and corporate sponsors. On Twitter, I found a website called Gabriel’s Life.  The purpose of this website is to serve as a source of information, create hope and inspiration, and help build a community through the shared voices and stories of people living with hydrocephalus. Through this website, I was able to contact people in my community who had hydrocephalus or knew someone with this condition.

The Internet has helped me keep in contact and updated with several of the families I met at the Detroit Hydrocephalus WALK. We have even formed our own Detroit Hydrocephalus WALK fan page on Facebook. This has given the Detroit WALK a way of keeping people updated on current events.

Supporting Others

After talking with many of the children and adults, I decided I needed to do something else to give support to others in Michigan. It has been my dream to start a support group, which people could rely on during their difficult times. Also, it would be a place where we could come together to celebrate our accomplishments. With the help of the Hydrocephalus Association, I am in the process of forming their first hydrocephalus support group in Michigan.

Feeling Renewed Purpose to Help Make a Better Tomorrow

There have been many ups and downs this past year, but I have been able to find myself again. I realized why I was placed on this earth.  My purpose in life is to support, encourage, and help others beat this debilitating disease.  I consider myself lucky, because at the age of 21, I found my reason for living. Maybe the reason I have hydrocephalus is because I can help make a small change in the lives of others who are suffering.

Our WALK might be over, but the journey has just begun. Catch the wave and help us eliminate the challenges of hydrocephalus!

Related Links

Please contact the author Jen Bechard  directly, for any rights to republishing this post. Peg Mulligan’s blog is protected by copyright, but I give any appropriate rights back to guest bloggers, for posts they may have authored, but which were hosted at this blog.

Twitter: Not Just for Conversation (also about Listening, Broadcasting, & Learning)

Summary: Twitter? Conversation, Broadcast, or Learning Platform? or all of the above? Based on a post by Brian Solis, this post explores whether Twitter is a conversation or broadcast platform. It also reflects on Mark Drapeau’s suggestion that Twitter is a knowledge-sharing/creation platform, more like a wiki, rather than a true social networking platform.

In a recent post, Brian Solis asks, Is Twitter a Conversation or Broadcast Platform? He answers his own question, ultimately stating, “Perhaps it’s both.” He interjects that it’s also “a listening platform – for the majority of users who use Twitter to garner insight and information, without necessarily sharing updates on their account.” Solis’ views correspond to a MarketingProfs’ study, which concludes:

“Twitter may be used as just another lead-generation tool. Or it may be about connecting with new friends. But above all, people on Twitter are truly motivated by learning new things and getting information real-time, as it’s developing.”

Twitter as a Listening Platform

As a TechCrunch post notes, “1/4 of all Twitter accounts are not following anybody and more than 1/3 have not posted a single Tweet.”  Forrester’s 2008 Technographics data similarly reports “a vast majority of people are merely spectators with less than one quarter actively publishing any content anywhere.”

A recent Harvard Business School report further observes that Twitter’s usage patterns are “very different from a typical on-line social network.”

A typical Twitter user contributes very rarely. Among Twitter users, the median number of lifetime tweets per user is one. This translates into over half of Twitter users tweeting less than once every 74 days.

Whether a user actively contributes content to Twitter or not, it remains a powerful listening platform. Just check to identify keywords that are relevant to your business. You can also use Twitter to identify trending topics. In Listening with Twitter: The Most Important Listening Tool in the Marketing 2.0 Arsenal, Jessica Bennett describes Twitter as a way “to listen to customers, prospects, competitors and influencers, removing much of the guesswork and tediousness from the process,” in a way that can be replicated across all disciplines in a customer-centric organization.

Twitter as a Broadcasting Platform

According to Solis, “statistical exploration indicates Twitter is growing in prominence. But, perhaps its importance, at this moment in time, is more closely aligned with a powerful, new, and seemingly engaging one-way broadcasting ecosystem rather than a two-way dialogue channel we initially suspected.”

Solis cites a recent Harvard Business Report, which states a small contingent of users are the most active on Twitter. According to the report, “Twitter’s resembles more of a one-way, one-to-many publishing service more than a two-way, peer-to-peer communication network.”

Specifically, the top 10% of prolific Twitter users accounted for over 90% of tweets. On a typical online social network, the top 10% of users account for 30% of all production. To put Twitter in perspective, consider an unlikely analogue – Wikipedia. There, the top 15% of the most prolific editors account for 90% of Wikipedia’s edits. In other words, the pattern of contributions on Twitter is more concentrated among the few top users than is the case on Wikipedia, even though Wikipedia is clearly not a communications tool.

In a comment to Solis’ post, Mark D. Drapeau mentions Clay Shirky’s description of Wikipedia as “co-creation without collaboration.” “There,” according to Drapeau, “as with Twitter, very few people are responsible for the overwhelming majority of content development.” Drapeau continues to compare Twitter to Wikipedia:

While a wiki and microsharing are different, on Twitter maybe the 10% of people that contribute 90% of the tweets can be thought of as subject-matter experts who would write an entire Wikipedia page. Sure, some edits are made, some discussion ensues, but they are the “knowledge broadcasters” and the other 90% of people are the gardeners and readers. And there’s nothing wrong with any of that. In theory, everyone is getting something out of the complex system.”

For another view of Twitter as an emerging broadcast platform, see the recent TechCrunch post, which reports that for many people, Twitter has replaced RSS readers. TechCrunch posts links to their Twitter account, which spread virally, as followers retweet those links. According to TechCrunch, “retweets are becoming a new type of link currency. We are big believers in retweets (in fact, there is now a retweet button at the bottom of every post).”

For us, and I’d argue increasingly for other large Websites as well, Twitter is not just about micro-media. The most powerful Tweets are those which point elsewhere. Or to put it another way, the shortened link may just be the most powerful type of micro-media there is. Those retweeted links are turning Twitter into a social broadcast media that rivals any other on the Web.

In the same vein, Cambridge-based HubSpot reports that over the last three months, “Twitter was the third-most significant source of traffic for its blog, referring almost $30,000 worth of traffic. ($30,000 is what [HubSpot] would have had to pay to buy a similar volume of traffic from Google via Pay-Per-Click ads.)”

Twitter as a Knowledge-Sharing & Co-Creation Platform

In Twitter is Not a Conversational Platform, Mark Drapeau argues further that “the underlying mechanics of Twitter more closely resemble the knowledge co-creation seen in wikis than the dynamics seen with conversational tools, like instant messaging and interactions within online social networks.” He again dismisses the idea that Twitter is collaborative, for the same reasons Wikipedia is not collaborative:

Wikis are causally thought of as platforms for “collaborative” document creation. But on Wikipedia, while many people share knowledge to co-create pages, the process is not formally collaborative in the sense that contributors are not cooperating with each other [in] ways that form group identity (to paraphrase Clay Shirky from his book Here Comes Everybody). To the contrary, passionate experts write the majority of text, and a long tail of other contributors offer relatively few, small edits. Many users contribute nothing. Through this process, Wikipedia pages often become valuable repositories of knowledge.

Drapeau further likens Twitter to Wikipedia, noting that though social relationships may form on either platform as a consequence of sharing content (for example, through direct messaging on Twitter and discussion pages on Wikipedia), “social relationships on Wikipedia and Twitter are not a prerequisite for satisfaction and success.” For instance, Drapeau explains, “the popular and useful account @BreakingNews has hundreds of thousands of followers but participate in effectively zero engagement. There are many Twitter users who contribute large amounts of useful information and engage in relatively little conversation. And it is not common for people to describe Wikipedia as a social network.”


To those who suggest “you must absolutely establish a Twitter account and commence the process of responding to everyone who Tweets about your company, market, or competition,” Solis responds, “…the more I observe interaction on social networks, and in this case Twitter, I believe that sometimes it’s effective to also maintain a presence simply by reading, listening, and sharing relevant and timely information without yet having to directly respond to each and every tweet – perhaps replying to only the critical or influential individuals that may need immediate information or direction to steer strategic activity.”

Concerning a recent Nielsen report that cast doubts on Twitter’s longevity, Mark Drapeau suggests that if Twitter is a knowledge-sharing/creation platform, rather than a true social networking platform, then its low user retention rate (just 40%) may not matter so much, especially “if the majority of use is infrequent spectating (particularly when the information is archived for asynchronous retrieval).” Drapeau again cites Clay Shirky to reinforce this point: “such an imbalance of contribution is not a condition of failure for the platform or its users.”

Meanwhile, on Brian Solis’ post, Miguel wisely notes in the comments: “Twitter will become what we make of it. Why can’t Twitter be a product of both – conversation and broadcast? Why does it have to one or the other?” As Rick Burnes makes clear in the HubSpot post “referral traffic doesn’t happen without work”—work that involves both engagement and broadcasting. He aptly observes, “You can’t buy $30,000 worth of visitors from Twitter. You have to build a network, engage with that network, then share your quality content with that network. And even if you do that, you won’t see returns overnight. But if you put in the time, make Twitter a part of your daily diet and engage with your network, Twitter will help keep your marketing strong.”

Phillip Baker’s comment on Brian Solis’ post nicely wraps up this “What is Twitter?”: Conversation versus Broadcasting” debate: “It’s like trying to define what a telephone is for – is it for chatting with friends, finding out information, shopping, banking, networking, sales? It’s used for all of the above.”

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Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog

What does Conversation (on Twitter) Mean to You?

I have been thinking a lot about my Twitter usage this past week, especially since my last post, Twitter Isn’t a Conversation. Since writing that post, I’ve been trying to clarify my own thoughts, by reading others’ posts about Twitter, and its conversational value for them. I should have called my last post, “Twitter isn’t a Conversation (for Me)” because the platform clearly is conversational, for a lot of other people.

Why Twitter is a conversation to some, and not to me, really lies in how we define conversation, and our objectives for being on Twitter, in the first place. In the post, What Level of Conversation Is Twitter?, Jeff Milone describes five levels of conversation:

  • The Weather: Passing conversation. Small talk. Can be amusing or entertaining, but rarely very interesting.”
  • Let’s Talk About “Blank”: The lawn needs to be mowed. This project is due on this date. I find this interesting. Conversation, but no real insight.”
  • Energetic: Conversations with people with whom you easily align yourself. Spirited agreements or disagreements.”
  • Kitchen Table: Meaningful talk about life, love, work, etc. Serious decisions are made.”
  • Deep Conversation: You’re out camping with your closest friends. You’re all around a campfire at 2AM talking about the meaning of life. Rare.”

Passing Conversation

For Jeff Milone, most Twitter usage falls somewhere in between “The Weather” and “Topical Conversation.” My six months on the platform confirm that the 140 character limit supports passing conversation most of the time. Microblogging and small talk go hand in hand, by virtue of the platform’s structure. On a personal level, Twitter is not going to appeal to people who don’t like small talk, or just aren’t very good at repartee (the kind of small talk that works best on Twitter).

This is not to say small talk is bad—small talk is often the first entrance into someone’s orbit. Think about how many of our professional and personal relationships or conversations started there. Small talk can lead to big talk, or at least to more traffic to your web or blog site, where you can develop your ideas. (In this case, small talk serves as a subtle headline to your site.)

Small talk (via status updates, banter, quick responses to each others’ links, etc.) is also a way to loosely stay in touch with people who interest us, whether for professional or personal reasons.

In a Wall Street Journal post that examines whether digital small talk is as effective as in-person small talk, Julia Angwin notes that unlike its formal American Heritage Dictionary definition as ‘trivial or casual’ conversation, small talk is actually serious business:

Small talk is a form of social insurance, explains John T. Cacioppo, the director of the Center for Cognitive and Social Neuroscience at the University of Chicago. “If I’m going to need to rely on you, then if we stay in touch on meaningless things, we can eventually work effectively together,” he says. “It’s like team practice – a basketball team has to practice together to win.”

Then again, a lot of small talk stays small talk, and a steady diet of small talk, recorded by Google for all to see, isn’t going to appeal to everyone long-term (probably boils down to, again, your objectives for using Twitter, the ol’ introvert versus extrovert thing, as well as how the industry you work in would judge your participation in public small talk).

Topical Conversation

Milone defines the next level of conversation on Twitter as Let’s Talk About “Blank”–the topical conversation. I think this level of conversation is where Twitter has the most potential, as a place to listen (see Twitter Isn’t About Conversation – It’s About Forming Groups) and more ambitiously as a way to develop dialogue and build community. Through the use of hashtags, Twitter users can tweet on predefined topics in a structured way, which allows participants to contribute in real-time and to find others with similar interests. I’ve participated in lots of webinars and one conference, using hashtags in this way, and the cumulative content and ability to easily find and engage with others who are interested in the same topic has additional value as a way to monitor and understand trends. Others can also continue adding to the hash-tagged content, long after the event has passed.

I’ve also seen community managers on Twitter build followings of like-minded individuals, tweeting on a given topic, on a particular day or night of the week, at a certain time. Community managers can later group together the various participants’ tweets in a follow-up blog post, inviting more substantive discussion of the topic. (What a great forum for audience analysis, focus groups, product development, and customer support.)

For me, this is the conversational aspect of Twitter which has the most business potential (See Econsultancy’s post, Twitter: the 13 types of tweet to take notice of.) It’s worth pointing out, however, that public conversation (the permanent, searchable record of tagged tweets on a certain topic) is still a different beast than what we ordinarily think of as conversation. (For one thing, the conversation keeps going, after most of the original participants have left, and when no one at that particular moment may be listening.) To me, this kind of behavior resembles the knowledge co-creation that Mark Drapeau describes in his post, Twitter is Not a Conversational Platform, but rather a knowledge-building platform, similar to a wiki.

Energetic Conversation

Here, Milone defines energetic conversation, “as spirited agreements or disagreements.” I have seen some Twitter heavy-hitters, usually also noteworthy in the blogosphere (people who often know each other offline) occasionally express different opinions, and go back and forth effectively and engagingly, in the spirit of healthy debate. In general, though, I don’t think the medium can accommodate that kind of nuanced discussion. In the post, You Will Be Misunderstood, Seth Godin points out that even in his blog posts, he is often misunderstood, and needs to clarify his thoughts, in subsequent posts. How much more difficult, Godin suggests, is it to clearly expresss our weightier opinions in 140 characters, without being misunderstood or having our ideas taken out of context? I see Twitter as having limited, direct conversational potential here, except, and this is an important exception, to start or point to a conversation that occurs some place other than Twitter (see Twitter Fails to Replace Conversation in Blog Commenting).

Kitchen Table and Deep Conversation

Twitter is like a telephone and can pass along kitchen table and deep conversation topics as well as more everyday topics, though I am  not inclined myself to share much personal information that way. The 140 character limit doesn’t easily accommodate that level of engagement, though if you follow someone long enough, you regardless begin to get glimpses of what that person values or thinks, inevitably through the content they share. It’s still wise to bear in mind that at least half of people in a recent poll (see Is There Still A Personal/Professional Line?) report that they act differently online compared to offline, often projecting a more professional persona online than they do in person. Here are some of the results from Dave Fleet’s poll:

  • “I am careful with networks that are open and searchable (Twitter, e.g.) to not say anything that might hinder me in the future.”
  • “I pride myself on staying true to my beliefs, but I will change what I say and how I say it depending on the group I’m in.”
  • “I try to keep it industry related as I’m trying to learn as much as I can from all of the PR professionals that I’m fortunate to have access to.”
  • “Regardless of the medium, I always assume my professional contacts may come across what I say and how I behave online.”
  • “I definitely act more professional online than I do in my everyday life.”
  • “Personally I am very different online than offline. It’s not that I’m a bad person or anything offline, I’m just less colorful when I’m online.”

If this poll is representative, it would seem that at least half of people would not share at the “Kitchen Table” or “Deep Conversation” level on Twitter, choosing instead to project a professional persona, or a more sanitized version of themselves, which leaves out more personal or soulful topics. (See How Are You? No, How Are You Really?)


Twitter is a conversational platform, but it supports different levels of conversation. It’s important to be clear about what those levels of conversation are, the difference between a personal conversation, and a permanent, searchable public conversation, as well as your own objectives and personal boundaries, when you start using the tool. A recent Harvard School Business study indicates that for the vast majority of Twitter accounts, “conversation” may mean listening most of the time. Most other times, according to Jeff Milone’s post, conversation on Twitter means casual conversation, or more topical conversation.

A lot of people (at least half, according to Fleet’s poll) present themselves more professionally online than in person, which is a factor to consider when deciding at what conversational level to engage with your followers on Twitter, who you want to engage with, and what you want to talk about.

Also worth noting is Brian Solis’ post, Is Twitter a Conversation or Broadcast Platform?, which asks whether Twitter is as much a broadcast platform as the conversational platform that it is often noted to be. In Twitter is Not a Conversational Platform, O’Reilley Radar’s Mark Drapeau proposes that the public conversation on Twitter “more closely resemble[s] the knowledge co-creation seen in wikis than the dynamics seen with conversational tools like instant messaging and interactions within online social networks.”

I’ll pick up with Solis and Drapeau’s ideas in my next post. Until then, are your online and offline personas the same? Is Twitter mainly a conversational platform? What other uses do you find for Twitter? What does conversation mean to you?

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Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog


Twitter isn’t a Conversation.

I was at the beach the other day with my kids, during a camping expedition to a local island, in our twenty-something-year-old, used motor home. (Hubby was working and couldn’t join us until evening.) I had stocked up on all my creature beach comforts, including my iPod and cooking magazines, and except for an occasional dip in the ocean with the kids, I was prepared to pretty much relax and zone out by myself for awhile—a welcome thing.

A New Playmate

To no avail, I was trying to get the kids to eat up the grapes which I had brought along for this venture (two varieties, no less), and which were getting hot in the sun, when a little six-year-old girl joined us, looking very eager to help relieve me of my surplus fruit. I asked her mom nearby (later, this pleasant woman turned out to be the little girl’s very youthful-looking, early-fifties-something grandmother), if it would be ok if the girl shared some of the grapes with us. The woman seemed appreciative and said “Sure.” After finishing the grapes, the little girl continued hanging about our beach blanket, especially when I was passing out juice boxes. So, with the grandmother’s permission, the girl joined us for a cold drink, too, and in no time at all, was sharing beach pails and shovels with my kids.

Stranded Grandma and the Reluctant Good Samaritan

The girl’s grandmother quickly explained that her boyfriend was scuba diving in the outlying harbor and had dropped her and the granddaughter (who was getting very bored at sea) off on the island, while he and his five companions continued to dive for lobster. “Cool,” I said. “Well, we didn’t really pack that well,” the lady replied, as she and her granddaughter hopped off at the boat landing rather impromptu, thinking that the guys would have finished up by now. Ah, I finally understood…They were stranded on the island, until the boyfriend came back. And the little girl didn’t have any beach toys to play with. The woman seemed a bit embarrassed. “I left most of what I should have brought, back on the boat,” she said.

I could totally relate. When my kids were really small, I was never one of those Moms, with the well-stocked diaper bag, who could readily pull out whatever might be needed, at a moment’s notice–an extra change of clothes, a snack, a juice box, the perfect-sized band-aid, why even double A batteries…No one would ever accuse me of being that organized. One of the main reasons I bought a 34-foot motor home, afterall, was so I could stop worrying about packing my beach bag.

As if to justify my investment, I was happy to help out the grandmother and little girl. I went back to the trailer, bringing back sundry treats: watermelon, whoopie pies, and drinks. The woman laughed at the contradiction of the snack I offered her: whoopie pie and diet coke. That she noticed the contradiction so quickly struck me—why, this woman sort of gets me, I thought, with some surprise.

She moved her blanket closer to my beach chair, and we chatted casually about all manner of things, while our respective kids played together in the sand, punctuated by quick dips, in to the unseasonably cool July waters.

I remembered my magazines and iPod, a few times, a bit ruefully at first, but the conversaton and laughs came so easly, I really didn’t mind, and soon started to enjoy the company. When her boyfriend and the other divers finally came back ashore, the kids were hugging each other goodbye, and the woman offered me lobsters from the scuba expedition. “Thank you for the food and conversation,” she said quite simply.

The Lost Art of Conversation

“Thank you for the food and conversation.” That’s something you don’t hear so often, these days. I’ve turned the phrase over in my mind, a few times since that day, wondering why it made such an impression on me. “Thank you for the food and conversation.” Lately, I’ve heard so much about conversation, in the context of social media, especially Twitter. This was the first time in awhile that I heard the word “conversation” applied the old-fashioned way.

There was something about the random conversation with the stranded grandmother that reminded me of how rare it is that we truly connect, even for a short time, so effortlessly, with someone outside our immediate circle. And how much of an impression it makes on us, when someone gives us attention in that way, when it’s not required. When all the stars align right, and you just click with someone, and enjoy talking about everything and nothing, and feel a bit sad when the conversation ends. How rarer still, it is to connect in such a way with a stranger. And how as much as the online worlds try to replicate this experience, and sometimes come close, it’s still no substitute for connecting in person. And that in whatever ways tweeting is similar to conversation, it’s just not the same thing.

What Twitter Is and Isn’t (For Me)

Twitter—a useful communication platform to share and receive links, news, facts, and quotes—a way to listen in real-time, identify trends, network, announce, promote, acquaint, inform, stay loosely in touch with those who have opted in with us (especially through direct replies), and to answer or ask the most straightforward questions. Yes, Twitter is quite valuable in all these ways. But anyone who tells you Twitter is all about conversation, is speaking of the exception to the rule—more often with a very narrow view of conversation, or well, a lot of times, just trying to sell you something. At its best, Twitter points to, or can start a conversation, which invariably leads to somewhere else (for example, the give-and-take of blog commenting, or group discussions on LinkedIn, or interacting on Facebook…These are much more like my idea of conversation.) But Twitter sound-bytes, as genuine conversation? No.

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Contacting the Author: Content for a Convergent World – Peg Mulligan’s Blog