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.

Shaping Public Opinion: Copywrite, Ink. Presentation

Shaping Public Opinion was presented Feb. 6, 2009 at Regis University.

View more presentations from CopywriteInk.

Changing The World: BloggersUnite.org

"How can we bring bloggers together to do good?" — Antony Berkman, BlogCatalog.com

In early 2007, it seemed like a simple enough question posed to his business partner Angelica Alaniz, designer Oscar Tijerina, and programmer Daniel Tijerina. So, within a week, the BlogCatalog team created a landing page, encouraging bloggers to support classroom supplies for students though the Omidyar Network-supported DonorsChoose.org.

"We asked BlogCatalog members to take a day off from writing about Britney Spears and Paris Hilton, and focus their posts on doing good to support education," says Berkman. "The initial challenge didn't attract much attention at first. A few people were interested, and I was almost ready to give up until this one guy in Las Vegas asked me for a news release to include on his business giving blog."

There was only on problem with the request. Berkman didn't have a news release. So that one guy from Las Vegas volunteered to write it, rewrite it for the blog, and distribute it to several key publications and blogs with the hope it might gain some traction.

The coverage quickly helped propel what would become the first social network-driven social awareness campaign on the Internet. DonorsChoose.org benefited from ten times the awareness online and more than 1,000 students directly benefited from the donations received.

"Coming together is a beginning." — Henry Ford

"It was really very overwhelming to see hundreds of bloggers come together and all write about how we could improve education and why people might support DonorsChoose.org," says Berkman. "We also learned a lot from the first initiative, especially that BlogCatalog had become an international social network for bloggers so we had to think globally."

One year later, after Bloggers Unite continued to grow with each increasingly successful campaign, Bloggers Unite for Human Rights became the new benchmark for success. The campaign generated 1.2 million posts that raised awareness, provided varied calls to action, increased attention on Amnesty International, and caught the attention of Veronica De La Cruz, Internet correspondent for CNN's flagship morning news program.

"Keeping together is progress." — Henry Ford

"While every campaign had been increasingly successful, the two and half minute segment on CNN was defining moment," said Berkman. "When you asked members who would have posts ready in the morning for consideration on CNN, it was nothing less than extraordinary watching bloggers move from doubt to disbelief to exuberance."

The successes were not without some sour notes. Because Bloggers Unite was designed to raise awareness for underserved causes, some critics thought Bloggers Unite didn't do enough. They felt Bloggers Unite didn't go far enough in creating sustainable engagement with specific causes, never considering that many participants stayed on with the benefiting nonprofit organization.

"Sometimes it's challenging in that our goal has always been to make it about the bloggers and the organizations we benefit," said Berkman. "So if that means talking more about the cause than ourselves or the results we achieve, so be it."

"Working together is success." — Henry Ford

What the critics didn't know was that BlogCatalog was already working on the evolution of Bloggers Unite, taking the initiative and transforming it into a social network that all online and offline charitable events could benefit from. Since the network allows any member to submit local, national, and international events, Berkman says he never has to say "no" to organizations again.

“The new network changed the dynamic of Bloggers Unite,” said Berkman. ”While we’ll still coordinate three major underserved social awareness campaigns through BlogCatalog every year, BloggersUnite members can now submit and support their causes as well.”

The new network solves another challenges too. BlogCatalog members had been previously split on how many campaigns might be too few or too many. The new network allows bloggers and other social networks to promote as many events as they want while BlogCatalog, combined with Bloggers Unite will still be home base for three initiatives every year.

Can we change the world in 90 days?

As 90 days is the ideal amount of time to launch a fully integrated social awareness campaign, it became a question that I used to ask frequently up until last year. After what started as writing a simple release became developing communication plans that provided enough guidance and freedom for Bloggers Unite, the answer has become all too apparent. Yes, we can.

For me, one of the unique aspects of the new Bloggers Unite network is the ability for bloggers and non-bloggers to raise awareness globally online while taking action locally. It's also one of the reasons Copywrite, Ink. asked BlogCatalog members and a few friends on Twitter to offer six to 12 local events to serve as our initial examples. Here are ten events recently added to the 37 different events currently available (in chronological order) to serve as inspiration for other nonprofit organizations.

Ten Local Events Highlighted At BloggersUnite.org

March 14. San Antonio, Texas | Be A Shavee
The world's largest volunteer-driven fundraising event for childhood cancer research invites thousands of volunteers to shave their heads in solidarity of children with cancer, while requesting donations of support from friends and family.

April 6. Puerta de Tierra, San Juan, Puerto Rico | Marcha Por Los Bebes
The Puerto Rico March of Dimes chapter will march for babies, an event that raises money to support programs in the community that will help moms have healthy full-term pregnancies.

April 11. Frederick, Maryland | Run For Congo Women
Run For Congo Women, hosted by Women For Women International, will provide direct assistance through sponsorships that will help women and children pay for food, medicine, and other lifesaving needs.

April 19. Las Vegas, Nevada | 2009 AIDS Walk Las Vegas
Aid for AIDS of Nevada will lead the AIDS Walk, which consists of individual walkers and walk teams to raise funds for critical services and elevate public awareness. The AIDS walk is supported by many organizations and celebrities, including Penn & Teller.

April 29. Portland, Oregon | The Pet Effect Fundraising Luncheon
The Delta Society will host a free fundraising luncheon (no minimum or maximum donation) to raise funds for therapy animal programs and their handlers, which makes a difference by providing a human-animal bond.

May 2. Twin Cities, Minnesota | Twin Cities Walk for Parkinson's Disease
The Parkinson Association of Minnesota (PAM) will walk to improve the lives of those affected by Parkinson's disease, through fundraising, community building, advocacy, and increasing public awareness.

May 2. Atlanta, Georgia | The Arthritis Walk Atlanta
The Atlanta chapter of the Arthritis Foundation will participate in the annual nationwide event to help improve the lives of the 46 million men, women and children doctor-diagnosed with arthritis.

May 3. Boston, Massachusetts | 2009 Walk For Hunger
More than 40,000 supporters will take part in Project Bread’s Walk for Hunger, where walkers of all ages participate in an event dedicated to feeding hungry people. Project Bread served 43.4 million meals last year.

June 19-21. Vancouver, Canada | The Ride To Conquer Cancer
Cyclists will bike for two days from Vancouver to Seattle. Funds will benefit BC Cancer Foundation to support breakthrough research and enhancements to care at BC Cancer Agency, throughout British Columbia.

June 24. Edinburgh, Scotland, UK | The Moon Walk Edinburgh
More than 12,000 women and men will walk the streets of Edinburgh in their decorated bras to raise money and awareness for the fight against breast cancer.

We'll be adding art, badges, and topic guides as each local event date nears as well as participating in several international event days throughout the year.

What can you do? Join BloggersUnite.org and then choose as many or as few campaigns as you want to help. Once you're a member, you can also add and manage local events in your community, national events close to your heart, or designated international event days that touch lives all over the world. The network makes it easy to upload materials to help and a link to the specific event page. And naturally, we're always happy to answer questions.

All that remains to be asked is whether you really want to change the world? I know I have, and still do.

Saving Lives: Communication Matters

Yesterday afternoon, a 1-year-old boy drowned and a 3-year-old boy nearly drown at a home-based North Las Vegas day care. According to the Las Vegas Review-Journal, authorities ordered a North Las Vegas day care to temporarily cease operations.

While this atrocity occurred earlier in the year than usual, it's not uncommon. Drowning is the leading cause of death among children ages 14 and under in Nevada.

In 2004-5, working with the Las Vegas Advertising Federation as director of public service, we were able to do something about it. Since child drowning was the number one under-served community awareness issue at the time, we used it to lead a year-long, three-topic public service campaign redefining accidents as negligence as a form of child abuse.

While the tone was hard, awareness matters. When people know it only takes 15 seconds for a child to drown, less time than it takes to answer the phone, or that drowning is also 14 times more likely to kill a child than a car accident, it makes an impact. It save lives.

The image attached to this post is the rendering of the print portion of the short-term communication campaign (print, outdoor, and radio). Copywrite, Ink. donated the creative and message. One of our clients, The Idea Factory, donated the first design. Publishing companies were invited to remove our mark from the advertisement and include our own.

Given how early the first drowning occurred in Nevada this year, it seems appropriate to share that this campaign served the community for two years. It is my hope someone might pick up where the Las Vegas Advertising Federation left off. While local media is always responsible in reminding parents of the dangers of pool safety, it tends to react after the first causality.

The same can be said about leaving children unattended in cars during the summer months, which was the second portion of what became an award-winning public service campaign. Again, it usually takes one casualty before the public begins talking about it, which is a great reminder why proactive communication still matters in an increasingly reactive communication world.

Delivering Service: AmeriCorps Benefits Nevada

Given economic growth in the United States is still near an all-time low and given the current economic crisis in Nevada, it's not surprising to learn Nevada Volunteers (formerly the Nevada Commission For National & Community Service), will not be included in the governor's budget. The decision will require the commission to seek legislative funding for the next biennium, which is no easy task given that most state budgets are being cut.

This will require state legislators to look long term rather than short term. The cost of losing AmeriCorps in Nevada is far greater than the modest matching funds required to keep the commission operational for the next two years.

The return on investment is $19 in funding for every $1 the state invests.

With a $19 to $1 rate of return and a President-Elect looking to expand AmeriCorps, common sense suggests that the state legislature needs to consider Nevada Volunteers a priority program.

Nevada Volunteers administers AmeriCorps programs in Nevada and works to link community-building organizations with the public and private resources they need. Specifically, with the modest state funding investment of $365,000 over the biennium, the state receives $4.4 million in AmeriCorps programming and $1 million in additional volunteer services.

During the last biennium, Nevada Volunteers administered critical funding for the Great Basin Institute, U.S. Veterans Initiative, Parasol Tahoe Community Foundation, Family Resource Centers of Northeastern Nevada, and the United Way of Southern Nevada, among others. In addition, after successful completion of service, AmeriCorps members earn an education award that can be used to pay for college or graduate school or repay qualified student loans.

The return in service outcomes far exceeds the monetary gain.

As impressive as the return of investment is for the State of Nevada, the direct outcome from 156,518 hours of service from 139 AmeriCorps members and 27,178 hours of community service from more than 4,100 AmeriCorps volunteers delivers badly needed services across the state of Nevada. A few highlights across AmeriCorps funded programs include:

• Collected and distributed more than 59,000 pounds of food and clothing to 21,000 Nevadans.
• Provided domestic violence prevention and intervention to 154 Nevada women and children.
• Provided outreach to 1,300 homeless persons, including veterans (with an 88 percent transition success rate).
• Provided direct educational assistance to approximately 200 at-risk children across the state.
• Built, restored, and maintained more than 96 miles of wilderness trails and 38 miles of natural habitats.
• Removed hazardous fuels from more than 386 acres, creating firebreaks, and planted 7,800 trees.
• Conducted 411 Red Cross first aid/CPR classes for more than 4,800 Nevadans.

It doesn't take someone like me, who has served as a governor-appointed state commissioner for seven years, including executive positions on the board for five years, to see that preserving AmeriCorps is vital to the State of Nevada. To do it, however, the commission will need more than a proclamation. It needs several state legislators to step forward and champion the required state administrative match during the 2009 legislative session.

The only question that remains is which legislators it will be and how long it will take. During the last legislative session when no line item programs were to be funded, last-minute legislation for AmeriCorps passed almost unanimously (42-0 in the assembly and 19-1-1 in the senate, with only a single dissenting vote by then State Senator Ann O’Connell) just before midnight as part of one of the last bills presented.

State legislators learned then how important AmeriCorps is to Nevada after realizing that our state will lose millions in federal and private support. One can only hope our new legislators are wise enough to see that cutting AmeriCorps doesn't save $182,500 per year. On the contrary, it will cost the state almost $4 million per year in lost funding and services.

Communicating Need: Bloggers Unite For Refugees

In Iraq, it’s people like 29-year-old television producer Alaa, who covered the trial of Saddam Hussein and was then forced to flee his country and escape to Stockholm, Sweden. He is one of the more fortunate. More than 2 million Iraqis have left Iraq since 2003 and more than 1.6 million are still displaced in their own country with fears that the United States will pull out too soon.

In the Democratic Republic of Congo, it’s the tens of thousands of men, women, and children, some 50,000 of which were even forced to flee refugee camps before they were leveled. Almost none of them has basic needs like food, clean water, or blankets.

In Thailand and Laos, it’s Hmong and Laotian refugees who fled and hid from the government of Laos, which had previously captured them, sent them to jail, or sometimes killed them. Some still struggle after more than 20 years, even if they themselves survived.

All over the world, it’s the estimated 40 million who are not only living without a home, but without a country — many of whom live with the fear of persecution because of race, religion, nationality, or political opinion.

“They beat me every time I made a mistake. They beat me with their hands and feet. They beat me with metal bars …” said Awng Seng, who ran away from the military in Myanmar and became a slave in Thailand. “They would throw pieces of chain at me ... there would be blood all over.”

And others — unlike Seng or Alaa or Lopez Lomong (a refugee who went on to make the U.S. Olympic team) — are people without homes, voices, or even hope. Their stories will never be told.

Bloggers Unite For Refugees: The Butterfly Effect

Almost every time Bloggers Unite encourages bloggers to take action and blog for good based upon input from 150,000 BlogCatalog members around the world, some people surface to question the validity of such calls for action — asking what good it does to ask people to post. Inevitably, a few even take it further and suggest that when people write about a cause, somehow that it endows bloggers with a false sense of making a contribution where more direct and tangible contributions are needed.

Nothing could be further from the truth.

Awareness is always the first step toward change; the second is acceptance and the third is action. And often times, what starts as a simple post has an effect that eventually touches hundreds, thousands, or millions of lives in ways that can never be counted or imagined. But even if it only touches one, who are we to dismiss the impact?

“Who helps a cause they have never heard about?” asks Antony Berkman, president of BlogCatalog.com. “The measure isn’t about the length of a post or even the number of posts … it's in the ability to reach people who have never considered the subjects that bloggers want to write about. I say let them.”

Berkman is right. No single person can be asked to save the world any more than one person at a time. And as long as some cause marketers continue to communicate tasks that are devoid of choice, overcomplicated in execution, or seemingly uphill or impossible, they leave the people they touch not inspired but feeling defeated in that they can never give enough.

On the contrary, throughout history, it has always been when individuals move against the majority of complicity that action takes hold. We saw it last year in America when the Senate passed the Refugee Crisis in Iraq Act, a crucial first step in addressing the needs of millions of Iraqi refugees. We saw it earlier this year when Bloggers Unite and Amnesty International brought attention and inspired action across several Human Rights issues.

And, we see it now from those who write letters to the Prime Minister of Malaysia, asking him to assist the more than 70,000 refugees from Myanmar. Or, perhaps, we can see it now by making a small donation to Refugees International, which is currently focused on the DR Congo. Or perhaps, we can see it today as more than 12,000 bloggers (and counting) make the individual choice to lend their voice and bring awareness to the plight of refugees.

It is in these ways that individual volunteer awareness and action makes a difference. The alternative is silence. Does it work? It works, even if it only works one person at a time.

Walking For Arthritis: Arthritis Walk 2008

My daughter is only two years old, but she wants to walk for arthritis on Saturday, Oct. 25 in support of the Southern Nevada Arthritis Foundation.

How do I know she does?

You’d never know to look at her, but she is one of the 46 million Americans living with arthritis, the nation's leading cause of disability. She has juvenile rheumatoid arthritis in both ankles and one hand, a bitter reminder that underneath her firecracker smile she’s always had to fight a little harder. There are no free rides.

What’s worse for us is that Nevada is only one of nine states in the U.S. that doesn’t have a pediatric rheumatologist. In lieu of seeing the specialist she needs to, we take her to a clinic that specializes in children with cancer. One of the doctors there flies in from Calif. four days a month.

We’re just grateful she was diagnosed. The quick care doctor who initially saw her rejected the obvious: the first ankle had swelled to twice the size of the other. He thought it was a hip infection. (The misdiagnosis might have been worse had some legislators not fought for tort reform.)

Tort reform in Nevada.

A few years ago, Nevada was facing a very real medical crisis. Doctors and nurses were being squeezed out of state as the cost of malpractice insurance continued to rise and health insurance companies added more hurdles than help. (Health care premiums for families here have increased 54.6 percent in the last seven years.)

State Sen. Bob Beers led the fight for tort reform in the state of Nevada and continues to fight for doctors and nurses, which is one of several reasons that the Nevada State Medical Association, the Clark County Medical Society, and Southern Nevada Medical Industry Coalition endorsed him.

It’s very sobering when you can make personal connections between your life and state government. For the three plus months we lived in Summerlin Hospital NICU, rarely did a day go by when I didn’t wonder what might have happened had the doctors and nurses who saved my daughter’s life moved on to greener, more doctor friendly states.

She won’t walk alone.

Two years later, add my daughter to the list of his endorsements.

Sen. Bob Beers told us yesterday he would take a few hours off the campaign trail to help her raise money for arthritis. In fact, since his father also suffers from arthritis, he asked that we set up my daughter’s page under the Team Beers banner. His campaign will be jumpstarting my family’s modest $5,000 fundraising goal with the first $1,000.

For more information about the walk, visit the 2008 Arthritis Walk schedule. And if you’d like to help us reach our goal, you can find the Team Beers page here.

Engaging Students: AAF and Heineken

In communication, especially advertising, there is no substitute for practical, hands-on experience. It’s something that underscores any class I teach.

I’m not alone in this belief, of course. There are several opportunities for college students to find experience across the country, including the American Advertising Federation (AAF).

Every year, the AAF hosts the National Student Advertising Competition (NSAC), which provides a candid, real world situation faced by a major account. More than more than 150 colleges and universities participate in the challenge. This year’s competition is being sponsored by AOL. (Good luck with that.)

While not as publicized as the NSAC, the AFF also hosts a Public Service Advertising Competition with Heineken USA (and this year, the Ad Council), which I wanted to lend some attention to today.

National Public Service Advertising Competition

Participants, which must be age 21 or older and members of an AAF college chapter, can submit their intent to participate by Jan. 15. The intent to participate form here.

Unlike the NSAC, the Heineken USA/AAF Public Service Advertising Competition allows students to enter as individuals or teams of up to three, providing even more flexibility. As participants, the students will produce print, radio and new media (demonstrating just how deep new media is taking hold).

Winners of the competition will receive $3,000 and a chance to pitch Heineken USA executives in White Plains, N.Y. (The second-place, third-place and up to five honorable mention campaigns also receive cash awards.) The winners will be announced in April, during Alcohol Awareness Month.

Why Experience Is Important For Students

As a student, it’s not always whether you win or lose (though winning can be pretty fun), but what you can take away. Despite already working in the field, one of my most memorable real life lessons came out of an advertising competition hosted at the University of Nevada, Reno (which now participates in NSAC).

Our class was randomly divided into two teams and asked to develop an advertising campaign for the Reno Philharmonic. It was fun, challenging, and provided some surprising true-to-life experiences that could never be duplicated in a regular class setting.

As “co-creative director” on the team, I learned that popularity sometimes influences what campaign is produced. Since my co-creative director lobbied the team for his spirited campaign, it became the one everyone wanted to produce.

I wasn’t so sure the campaign was right for the demographic, but had to admit that daring the maestro to conduct an orchestra from an Indy car or roller coaster was pretty creative. The judges thought so too. Our team won for creative prowess based on their scores.

Unfortunately, we lost the account based on the maestro’s comfort level with the campaign and the budget. As went the client, so went the competition.

Right on. It’s not always about being clever. Sometimes it's about connecting to the audience and, well, the account. That's something you don’t always learn in the classroom.