One Man's Opinion on Media Fragmentation and ALS - Do We Need a National Spokesperson?

All organizations are looking for a panacea, a message that resonates across the populace and draws them to your product or service in droves. They are also searching for that ideal spokesperson that reaches their targeted consumer and delivers that message in an emotional way to tie their brand to your heart, and ultimately your wallet.

I currently work in the Custom Analytics space in the Consumer Packaged Goods Industry, and help Fortune 100 companies decide how to market, advertise, price and promote their products and services. Billions of $$ are spent annually on TV, Radio, Price Promotion, Coupons, Billboards, Print, Sampling, Direct Mail, Sponsorships, Loyalty Cards, Viral Campaigns, Rebates, Digital, Mobile, Social Media and the list goes on.

Does all that advertising work? Yes and No.

The challenge - Media Fragmention. As recently as 1980, almost all U.S. homes received only four TV stations via their roof top antennas - ABC, NBC, CBS, PBS. PBS did not advertise. You probably read a morning and maybe even an afternoon local newspaper. Subscribed to a weekly magazine like Time, Newsweek, Sports Illustrated, or Good Housekeeping, saw an occasional billboard while driving to work, and listened to AM Radio or FM if you were really adventurous and your car received the signal.

The advertiser needed only to drop a network spot or two, or a print ad, and could reach almost the entire target audience very cost effectively. Many brands had celebrity spokespeople that had broad appeal and reached across demographic differences to influence almost everyone. You would be surprised as to how many of today's Top 20 US Brands were on a similar list thirty years ago. Unless you have an incredibly compelling product or service with mass appeal it's very difficult to move into this group today.

Circa 2011 and the landscape is vastly different. 500 TV channels are distributed without regard to geography via cable, satellite and the web. Content specific to almost any interest is able to be accessed live, via DVR, or on demand. Newspapers and other publications as we knew them are almost dead, etc....

This means the consumer is in almost complete control and can now go his or her entire life and only watch, read, and listen to what they want to see and hear. A Midwestern born sports fan like myself living in LA can ignore the Dodgers, Angels, USC, and UCLA. I now receive the same local media content delivered on the Twins, Vikings, Hawkeyes, and Wildcats as guy living in Minneapolis, Iowa City or Kansas City. I can also watch only Fox or watch only MSNBC and never have my political views questioned. With all the messaging and information being delivered the brain cannot process everything. We survive by selectively processing only a fraction of all the noise.

What does this mean for overall messaging and ALS Awareness and how do we reach a broader audience?

Regarding messaging, there are many ALS organizations out there but no one that singularly controls the message overall. Good news is that almost every group has a message related to Finding a Cure. As well they should. It's what all PALS demand, what we want to hear, and it has a broad appeal. Patient Care, Patient Services, and Public Policy are also all incredibly important as well. Especially if you are a PALS or a CALS. Just not as sexy and saleable to outsiders.

I applaud Angela Lansbury and Nancy O'Dell, and of course Jerry Lewis, for what they are doing and what they have done to contribute to the cause. No question there. Do they bring people to the cause that otherwise would not have participated? Absolutely. Do they make as big an impact today as they did 30 years ago? Not even close. Should the ALS organizations continue to solicit celebrity involvement? Of course. In the future, will some more well known celebrities or their spouses, parents or children contract ALS? Not many, but unfortunately, some will. Will those that do participate in ALS Awareness campaigns? Maybe, but it's a very personal decision and completely up to them. As much as any PALS or any ALS organization wishes they would, it's up to them. If they choose to support only local or regional ALS clinics or organizations, is that OK? Absolutely, with the power of the web and social media there are no organizational and geographic boundaries regarding the expansion of ALS Awareness. It's all additive, it's all good, and now it's all national. Any news is good news and keep it coming!

I am in my early 50's and can say that outside of the MDA Telethon, I have never watched one television show that Angela Lansbury or Nancy O'Dell has appeared in. Nor Jerry Lewis either since I was 10 years old either. No interest. On the other hand, Ex- Iowa Hawkeye and Minnesota Viking Wally Hilgenberg's story on HBO, or former Minnesota Twin Kent Hrbek's commitment to his father's legacy means more to me than any television star ever could because they were players on my favorite teams growing up. It takes a village and everyone is drawn to something different. Never have watched American Idol, Dancing with the Stars, or any Reality TV show for that matter. Just doesn't appeal to me. If you were advertising with ESPN, Big Ten Network, Fox Sports, NFL Network, 24, Law & Order and a handful of others you might reach me (if I did not zip through it). If not, it wasn't happening. Even if you are able to reach me, I better have a need for your brand, or a personal interest in your cause, or it will be tuned out and selectively processed.

It may be the top rated show of the ratings period, or a story about the saddest and nastiest disease or illness a person could have. Unless the show is of interest, or the disease was close to myself, my immediate family or a close friend it gets tuned out and selectively processed. Could be an incredible and heart-warming story to some and not matter at all to others. There are so very few brands, less causes, and even fewer celebrity figures today that resonate across all consumers that you can count them on one hand.

The traditional media landscape is costly and archaic for all but the most sophisticated advertisers.  A top rated TV show today produces a much lower Nielsen rating share number than even ten years ago. With the possible exception of the MDA Telethon, there is not one ALS media related event that continually resonates with a broad audience. And we share that with 42 other, albeit very important, neuro-muscular diseases. Breast Cancer and HIV/ AIDS, among the diseases, have done by far the best job in gaining support and awareness. Both also have an exponentially higher current or potentially affected population than ALS, and an audience pre-disposed to hear the message through life experiences related to themselves, a relative, or a close friend. ALSA, MDA, the research organizations, and other various ALS groups are not sophisticated advertisers or marketers. A strong argument could be made that hiring outsiders with that expertise and finding an agency to help could be a great investment that would grow the pie and reach a broader audience. However, if they aspired to do so, it would require spending 20-40% of revenue on those efforts. To do it well (with no guarantee of success) would also necessitate a long term, multi-year investment to "build the brand." This would undoubtedly bring scorn from the PALS community who demand the lion's share of monies go to finding a cure and not "PR" or "Marketing." That leaves grass roots activities, networking, and publicity via social media as the best use of scarce resources.

If you believe the numbers, there are 30,000 in the US living with ALS at any given time. Only 50% - 75% of these folks are aware that they have the disease in the US and assuredly far less worldwide. Average onset age of 45-65, so maybe a third to half of those are domestic PALS are internet-savvy. But their kids are all web-savvy and act as a proxy for the other 1/2 - 2/3. The US is only 5% of the world's population so there may be as many as 600,000 living PALS worldwide. Let's say 33% of those know they have the disease (probably very high estimate but humor me). Internet penetration in all but Western Europe is probably spotty, but conservatively add another 30,000 to the mix. Now we have 50,000+ PALS with web access, another 250,000 caregivers, families, and friends, and now we are at 300,000 with access to the above. As many in these groups (unfortunately) turn over every 2-5 years, and internet and social media penetration continues to grow worldwide, the ALS communities penetration and reach will continue to expand.

This is good news. In fact, for a fairly uncommon disease like ALS, there is great news. The Internet, and as importantly Social Media, transcends geography, citizenship, race, gender, and almost every other defining characteristic of an individual. Content doesn't have to appeal to a broad audience or project huge ratings to make it online. It's free and allows those families with ALS to reach out to their networks of family, friends, and even acquaintances with news, updates, and requests for support. It allows sharing of research news, provides patients information and resources, and informs us of upcoming events at the push of a button.

It allows a home bound PALS in Europe to watch and participate in an Ask The Experts webcast, AND ask questions via chat streamed live across the globe from the campus of UCLA. It allows a person in California to be in a fALS Facebook group hosted by a fALS Advocate in Kansas City, along with fellow patients and family members across the nation the world. It allows the inspirational stories of former NFL players from Baltimore and New Orleans to go viral and become national and international stories overnight. It allows an individual PALS from North Carolina to lead an industry-wide discussion on bettering the new ALS/ CDC Registry and make it more rich and meaningful. It gives an Indianapolis PALS a forum to promote clinical trail participation for an exciting new study. It gives a notable Washington DC based fALS Advocate a vehicle to help families explore their ancestry and better understand known and unknown family connections with the disease. It allows the story of long-time PALS fighter and contributor, published in a local Santa Cruz, CA newspaper, to become widely known across the entire PALS community.  I wish I had more time and space to single out the hundreds more like them that do these things not for publicity, but because they can, and it's the right thing to do. These PALS represent us and come from all walks of life every day to inspire and lead by doing. Let's continue to share stories and celebrate their achievements. After all, they are our celebrities and they are our spokespeople. And many of us wouldn't have it any other way!

The attached is only my opinion, and a record of my own experiences. Like any other post on this blog it is meant to share information. It's up to you to agree or disagree.

fALS National Summit To Be Held March 13, 2012 in Washington D.C.

ALSA just announced the establishment of a new fALS Summit for 2012. This half day meeting will take place immediately prior to the 2012 ALSA National Advocacy and Public Policy Conference in Washington D.C. on May 13 beginning in the morning.

It's going to be great to be able to interact with our peers, and not having to choose to attend a fALS breakout during the larger meeting over another important topic.

They are soliciting topics and comments for meeting content by e-mailing fals@alsa-national.org. Just a few that were suggested at the UCLA fALS Meeting a few days ago were the following: Clinical Trials 101, Clinical Trials for fALS, Fast Tracking Successful Drugs/ Compassionate Use, Discovered Genes, Auto Dominant vs. Recessive Genes, Genetic Testing and Counseling, Ancestry Research, Discussions with Children/ Relatives/ Co-Workers/ Friends after Diagnosis/ Financial Planning, Health and Life Insurance Disclosures and Planning, Volunteer and Advocacy Opportunities, Living with ALS. This list is by no means all inclusive, just a starting point. Please weigh in!

My personal view is this is a very positive step and way overdue. I am awed by the contributions from people like Augie Nieto with Augie's Quest and the MDA, and Dean Rasmussen, the father of ALSA Advocacy. These individuals are not from Familial ALS Families and have still made huge, long-term impacts on the fight for a cure.

Their actions should motivate those of us that are in the fALS community. We all need to step up and participate in the cause in anyway possible. That may mean participating in clinical trial studies from our healthy relatives, volunteerism, fund raising, advocacy, or any other contribution you can muster. After all, it's our parents, children, siblings and relatives!

Pick an organization, any organization. Maybe it's one of the two national full service organizations - ALSA or MDA. Possibly one of the many researchers like ALS TDI, Packard, Northwestern, Mass General, Emory, Methodist, or UCSF. Groups that raise money for one or two research entities like Augie's Quest, Project ALS, Les Turner and the list goes on. Many are very worthy and even though there is some redundancy in their efforts I have come to view their overall contributions as cumulative. When you are part of a family with a hereditary terminal illness that is very prevalent it is very easy to be negative. Let's challenge these organizations to improve in a positive way as well and be as efficient as possible, but focus as individuals on things we can control.

E-mail 2012 fALS Summit suggestions to fals@alsa-national.org.