Living With Arthritis: 300,000 Kids

There are approximately 300,000 children in the United States that have some form of arthritis, which is diagnosed almost anytime between the ages of 2 and 16. The are several types of juvenile rheumatoid arthritis (JRA) ranging from systemic JRA, which affects the whole body, to oligoarticular JRA, which affects four or fewer joints.

My daughter was diagnosed last year. She has juvenile rheumatoid arthritis in both ankles, one hand, and some limited range of motion in other joints. Still, we're grateful she was diagnosed, as Nevada is only one of nine states in the U.S. that doesn’t have a pediatric rheumatologist.

Arthritis and BloggersUnite.org

When you consider all of the causes, ranging from AIDS to World Hunger, arthritis doesn't really register on a large scale. But social media, unlike SEO, is not all about the numbers. It's about engagement, connecting people with common interests whether those interests are altruistic or something as simple as a celebrity. It's about how information and action spreads.

For example, it helped one blogger find a greater forum for reporting on Arthritis Walk Atlanta, which was held today, or a few more bloggers interested in writing about Juvenile Arthritis and Kelly Rouba's new book, in which she shares her own story and the stories of various kids, teens and young adults who suffer from arthritis.

Awareness is extremely important for kids and parents because the earliest symptoms are so easily dismissed or misdiagnosed. Very often, the symptoms only include a light rash and swelling around a single joint, not all that dissimilar from a common sprain or suspected bug bite. In fact, last year, even Jennie Garth, a former "Beverly Hills, 90210" actress, shared how a "mysterious illness" afflicted her 2-year-old daughter. Eventually, after significant emotional distress, they learned it was JRA.

I learned about Jennie Garth's story and Kelly Rouba's book through BloggersUnite, which reaffirms some of the decisions we recently made for our own daughter. And perhaps, some parent with a child who has a mysterious illness will learn about JRA here too.

JRA and Treatment

Given that our daughter was born three months premature, the sudden diagnosis of JRA was a surprise. After all those months in the hospital and regiment of medications once she was home, the last thing any parent wants to learn is that the light of the tunnel (when all things seem normal and the medications phased away) is that there is another tunnel at the end of the light.

For us, it was the not-so-easy to make decision regarding Enbrel, a tumor necrosis factor (TNF) blocker that blocks the action of a substance your body's immune system makes. In other words, the trade off of taking Enbrel can make you more prone to getting infections. In other words, if your child even has a hint of a cold, you have to immediately stop treatment. (The alternative was methotrexate, which is primarily used for chemotherapy.)

Still, since Enbrel is a relatively new treatment for kids, we took a one-day trip to the Mattel Children's Hospital at UCLA to meet with Dr. Deborah McCurdy, who is the head of the pediatric rheumatology department there, for a second opinion. After the exam, she spent more than an hour with us, carefully and conscientiously weighing our options and noting that without treatment our daughter's overcompensation could lead to lifelong complications such as a curved spine.

Our daughter has been receiving injections for about three weeks now, and has already shown dramatic improvement. Normally, the expectation to see signs of improvement is six weeks. We're grateful, and hope sharing this might help another parent some time.

Is there any other takeaway? I think so. If there is a common theme with all these stories, it is that you don't have to be afraid. As fear is always related to something that hasn't happened, it only stands in the way of taking action. So for parents whose children face JRA, learn as much as you can, seek out second opinions, and never let fear immobilize you from taking the next step.

Doubling The Dilemma: National Pork Producers Council

What's in a name? Everything, according to the National Pork Producers Council.

For the last few days, the National Pork Producers Council has been issuing news releases to remind consumers that "swine flu" does not come from pigs. At the same time, it is lobbying legislators and the media to refer to the virus with its less common scientific name, the "H1N1" virus.

According to AdAge, the industry made the decision because it feared uninformed consumers would avoid buying pork. But were these consumers really avoiding pork?

Not according to NewsChannel 10 in Amarillo, Texas, which spoke to butchers at the local level and WalMart on the national level. Not according to The Herald Bulletin, which reported from Anderson, Indiana.

In fact, not according to anyone until the National Pork Producers Council began distributing releases.

As of April 22, pork bellies had rallied and stabilized. While people were concerned about the flu, few seemed concerned about pork. But that changed when the National Pork Producers Council sent out a release on April 26, which was followed the next day by a flurry of stories about the release despite the fact that the media had never made a verbal connection between "swine flu" and pigs before.

By the end of the day, Smithfield Foods Inc., the largest pork processor, saw a 12 percent tumble (but many non-pork stocks did too). Since, the public relations nightmare for the pork industry has only gotten worse.

In fact, the more that the National Pork Producers Council talks about what it calls a real problem (one that didn't exist until it said there was a problem), it only gets worse. How bad? Take a look at a recent Q&A session with Chris Novak, National Pork Board CEO, on the Cattle Network.

During the session, the interviewer asks several times "How did those two words get connected?" Novak goes into detail saying "swine flu dates back to a 1918 influenza outbreak that affected both humans and swine. This virus, however, has not been identified in swine and has been spread through human-to-human transmissions, so the label applied in the media earlier this week created unnecessary confusion in the minds of many consumers."

So how did the terms get connected? You just read it! The National Pork Producers Council linked them!

According to the session, Novak says "that one estimate showing an 8 percent drop in futures prices since last Friday [last Friday was before the council's near daily releases began] has pushed losses for the swine production industry up to $6.5 million per day. The losses are real and personal for thousands of pork producers who have struggled with market losses over the past 18-20 months."

Fear is a terrible thing. It makes regular, ordinary people behave irrationally. And here, it seems that this fear wasn't a reality until the National Pork Producers Council overreacted to a linkage that didn't seem to exist before their communication.

Worse, the media, legislators, and public are now faced with their own communication problem in having to rename and rebrand what was known as "swine flu" with the clunky "H1N1" moniker. How likely will that be successful? Given that CBS just ran a story using the "H1N1" name but sporting a picture of pigs, we might say when those little guys start to fly.

Case study ahead.

Ignoring Audience: Traditional Thinking

According to a new study by Integrated Media Measurement Inc. (IMMI), a consumer behavior research firm, audiences are spending more time multitasking while watching broadcast programs than ever before.

Specifically, the study found that TV watchers spend an average of 9.3 percent of their time online while simultaneously watching television. Among viewers watching broadcast TV, 11 percent also are surfing the Web. For cable viewers, it’s 8.2 percent.

"During the past year, there has been much debate about the perils of making television programming available via the Internet," said Amanda Welsh, head of research for Integrated Media Measurement Inc. “While some have speculated or feared that online accessibility would cannibalize television audiences, our data shows that the affinity of DVR users to view television episodes online offers advertisers new opportunities to recapture a desirable audience that had been slipping away."

Of the people who watched primetime programming both online and on a DVR during the month, 35 percent watched four or more episodes online, compared with 15 percent for people who watched prime time programming both online and on live television. Of the people who watched prime time programming both online and on a DVR, 30 percent went online only once, compared with 57 percent for people who watched prime time programming both online and on live television.

Previously, IMMI had found 50 percent of online viewing are audience members watching episodes they missed on television. They are either filling in an episode online when they had already seen the other episodes around it on TV (18.7%), or they are catching up on an episode online after seeing the subsequent episodes on TV (31.3%). The other 50% are apparently viewers using the Internet to check out shows, replacing the channel flipping or sampling they might have done on the television in the past.

Integration Over Traditional Thinking Is Key

The bottom line is that advertisers cannot continue to afford a singular mindset as if to choose television over online marketing. As the IMMI study suggests, consumers do not distinguish between delivery systems.

They simply want to watch their programs. And we're not the only ones to think so.

“To effectively utilize digital media, and promote its integration with traditional media, marketers and advertisers must overcome the two obstacles that continuously arise: education and measurement,” said Bob Liodice, president and CEO of the Association of National Advertisers told TV Week. “Only once the industry takes steps to become savvy will integrated marketers be able to fully embrace all that advertising today can offer a brand.”

We're seeing it play out exactly like this with one of the projects we're currently engaged in. While more traditional thinkers on the team are quick to dismiss the greater impact of other team members (both with product and with exposure), the 360-degree view demonstrates the audience does not distinguish between entertainment assets such as soundtrack and film nor do they distinguish between traditional media and online engagement. Rather, the audience sees various elements as different contact points working toward each other.

In this case, as the online audience learns about exposure in traditional media, they rush to review the content and set the tone for non-engaged reader feedback left on the traditional articles. In essence, they are both engaged promoters and media consumers. No one can really separate the two as traditional marketers/public relations practitioners and social media experts tend to do nor as advertising and public relations or print, broadcast, and online proponents continue to do. Nor even as broadcast/print or online programmers/online continue to do for that matter.

Integrated communication, working seamlessly together on assets or promotion, will deliver the best return on investment over the long term, which is best described about 90 days. That's right. Ninety days is long term, and online, even seven seems like an eternity.

Some Related Ideas

• Is social media a revolution in local government communications? by Simon Wakeman

• 365 is the new 360 by Tom Beckman

• Beginning 2009: The year of communication from Copywrite, Ink.

Blogging For Hope: Hunger And Hope

Scientific American recently published an article that asks a question designed to strike at the heart of everything we know: Could food shortages bring down civilization? The article, by Lester R. Brown, included three key concepts, before calling for a massive and rapid intervention.

• Food scarcity and the resulting higher food prices are pushing poor countries into chaos.
• “Failed states” that export disease, terrorism, illicit drugs, weapons and refugees.
• Water shortages, soil losses, and rising temperatures from global warming that impact food production.

"As the world’s food security unravels, a dangerous politics of food scarcity is coming into play: individual countries acting in their narrowly defined self-interest are actually worsening the plight of the many," he wrote. "The trend began in 2007, when leading wheat-exporting countries such as Russia and Argentina limited or banned their exports, in hopes of increasing locally available food supplies and thereby bringing down food prices domestically."

John Holmes, writing for the UN Chronicle, cites an earlier date. He pinpoints that food prices began to rise in 2004 while production increased at a pace slower than demand. The result? According to Bread for the World, 963 million people across the world are hungry and 16,000 children die from hunger-related causes daily — one child every five seconds.

There Are Big Calls To Action, But Change Happens Small.

When the fact and figures become so immensely staggering, people tend to tune out and shut off. After all, what can one person possibly do to change the world? How could helping one person matter, when it fails to help the nearly one billion who need help now? How will talking or writing or posting about any specific world problem possibly help? How indeed.

One of the greatest lessons I ever learned from working and volunteering in the nonprofit sector was that people tend to contribute less when the tasks seem overwhelming. (The same can be said in the private sector too). So much so, the outcome results in characteristics similar to depression, except en masse.

It's not uncommon for people feel sad, guilty, or avoid taking any action because "doing anything is too much effort" or "nothing one person can do has any impact." It's just not true. Change happens in small, sometimes unnoticeable ways.

Heifer International Makes A Difference.

And sometimes it is noticed. Heifer International has more than 180 projects that make a difference all over the world. In fact , since 1944, Heifer International has helped communities learn to become self-sufficient by raising animals that provide direct benefits such as milk, eggs, wool, fertilizer, as well as indirect benefits that increase family incomes for better housing, nutrition, health care, and schools.

It's more than a hand out, it's a direct and sustainable hand up. And its those small successes that make all the difference. Here are just a few from BloggersUnite.org and BlogCatalog.com bloggers. They contributed more than 10,000 individual posts and actions (and counting).

Speaking Engagement: AIGA Meets Twitter

If you were wondering (and some people are still wondering) whether Twitter is a permanent addition or passing fancy, AIGA Las Vegas recently invited me to speak along with Warren Whitlock, author of the Twitter Revolution. Everyone is serious about Twitter.

Whitlock is a bestselling author, speaker, publisher, blogger, and marketing strategist. You can find him and about 28,000 followers on Twitter. I'm one of them. He was one of the first people I followed on Twitter, given that he is also from Las Vegas. It's also nice to know I'm in such good company because the AIGA event is two hours.

AIGA LV '09: Java Jam: Twitter Whut?

AIGA LV '09: Java Jam will take place from 6:30 p.m. - 8:30 p.m. on Wednesday, May 6 at Faciliteq in Downtown Las Vegas. Parking is easy; AIGA Las Vegas provided a map. The event is sponsored by MGM Mirage and Clio 50.

I haven't settled in on what to talk about next week. Here are three thoughts I might brush upon:

• Handling real-time communication as company spokespeople.
• The varied approaches for organizational engagement.
• Why giving up control doesn't mean lack of management.

Of course, I'm always open to new ideas. For example, I loved the impromptu session with Danny Brown today on Twitter. The discussion was integrating social media into crisis communication. It's a great topic; one worth fleshing out sometime soon.

Measuring Communication: Wrapping The ROC

Since January, we've presented an ongoing series dedicated to the Return on Communication (ROC) formula. The ROC defines a communication measurement abstract across advertising, marketing, public relations, internal communication, and social media.

[(B • I) (m+s • r)/d] / [O/(b + t + e)] = ROC

The formula demonstrates how the return on communication is related to the brand equity of the company or product, the intent of the communication, the execution of that intent, the reach and duration of that communication, and the outcomes that communication produces over the cost required to execute it. When matched to the equation, it would read like this:

The brand times intent (message plus suitability times reach divided by the duration) over the outcomes, divided by the cost (budget plus production time plus experience expended).

In other words, a company with a strong brand and well-defined intent that properly communicates to the right audience will produce better outcomes. Those outcomes can then be divided by the cost required to execute the communication. Simplified, all this really means is the return on communication is equal to how well the intent achieves its outcomes.

I | O = ROI

This also concludes the Monday series so we can present another white paper series next week. However, from time to time, we will be revisiting the abstract with models and case studies to demonstrate how it works by example.

Download The Abstract: Measure: I | O = ROC

The ROC is an abstract method of measuring the value of business communication by recognizing that the return on communication — advertising, marketing, public relations, internal communication, and social media — is related to the intent of the communication and the outcome it produces. Every Monday since January, the ROC series explored portions of the abstract.