2014 MS Influencer Summit

Written April 25, 2014 – by Dave Bexfield

It was clear the moment I opened the welcome bag that the marketing and communication representatives at EMD Serono and Pfizer had done their research and knew the secret key to endearing themselves to MS bloggers: feed us. Contents of said welcome bag: Utz Pretzel Stix (1 package), Chips Ahoy! cookies (4), Nutter Butter cookies (4), Peanut M&Ms Fun Size (4 packages), Club & Cheddar Sandwich Crackers (6), Cheddar Goldfish (1 package), Oreos (6), and for the appearance of health, one Simply Balanced fruit and nut bar and two packages of Natural Almonds (unsalted and unroasted!). The only two things absent from the welcome pack of my dreams? A six pack of craft beer and a bag of Cheetos. Such a missed opportunity. 

Earlier this month my wife and I ventured to EMD’s headquarters outside of Boston for a fully sponsored trip—travel, lodging, and food provided, along with a small stipend—for their 2014 “MS Influencer” Summit. Invited to provide their brainpower in improving EMD’s outreach to the MS community: nine respected “influencers” along with a single goofball rabble-rouser, one who organizers no doubt felt at any given moment would stuff the end of a metal fork into an electrical outlet. Fears were confirmed when during a tour of their facility, said misfit mentioned how excited he was … to try some free product samples. Priceless is one way to describe the look on their faces. (“Mortified” might be another.)

I guess I shouldn’t question why I was the only one with a plastic fork. As for the influencers with access to traditional flatware, they included my new (and dear) friends blogger Nicole Lemelle (www.mynewnormals.com), writer Lisa Emrich (www.brassandivory.org), and author Jon Chandonnet (www.jonchandonnet.com). The other six silverware users all have equally powerful social media resumes, many of whom you may recognize: author Debbi Petrina (www.debbiems.com), bodybuilder/author David Lyons (www.msfitnesschallenge.com), humorist/author Yvonne deSousa (www.yvonnedesousa.com), advocate Laura Kolaczkowski (http://insidemystory.com/), blogger Lisa Dasis (www.mslisasays.com), and some newsy viewsy dude named Stuart Schlossman (www.wwwmsviewsandrelatednews.blogspot.com). We all got to break bread together the night before the summit (note: a couple hours after getting our food-filled welcome bags) to exchange both friendly hugs and audible gasps when discovering one’s website was completely unfamiliar to another.
Now I could go into exhaustive details about our summit, which addressed a number of topics and included EMD Serono leadership at the highest levels, but I did sign something that resembled a nondisclosure-or-we’ll-sue-your-pants-off agreement. And after wearing pants all winter, trust me, you don’t want to see my legs, which are so white that if I sprawled out on a highway, pilots might mistake them for runway markings. Oh, I exaggerate slightly the agreement I signed (I seriously doubt they want my pants), but all of us bloggers did agree to keep particular proprietary information discussed private. So I’ll leave out the private parts so to speak. Hmm, perhaps I should have worded that differently….

The first big surprise: nearly half of the bloggers have a written a book. Now I’ve been writing professionally for more than two decades, yet I can count the number of books I’ve written on a closed fist. For years I’ve been making excuses to my wife Laura (I have this disease, blah, blah) and being surrounded by book authors with MS was only proving my wife righter and righter by the minute. The second big surprise: EMD Serono and Pfizer took our gathering—even yours truly—very seriously. There was a detailed preprinted program, they listened intently to our discussions, and by my count nearly two dozen staffers were participating in some facet in our summit. When they said we would meet senior leadership, I was expecting perhaps directors of their social media communications department and maybe a costumed mascot of the drug company. I was wrong. We were given unprecedented access to the top. The tippy top.

For a full hour during lunch, we listened to—and questioned—EMD Serono’s president and managing director Paris Panayiotopoulos, the head of the MS platform in global research and early development Mark Shearman, PhD, and the head of US medical affairs and neurodegenerative diseases Fernando Dangond, MD, FAAN, MB (no clue what all those letters mean, but I’m assuming important stuff). I was well prepared with detailed and specific questions—thanks in part to the help of fellow members of ActiveMSers—inquiring about the status of their present MS research. You can read about the research here, released at the American Academy of Neurology annual meeting two weeks after our gathering. The panel also addressed their ongoing efforts in seeking treatments for progressive forms of MS and EMD’s dedication of resources to R&D for this particularly fickle disease path. I was ready to pepper in a few more Qs, but when I made eye contact with the vice president of US communications Lisa Buffington, who after the morning session was more than familiar with my brand of humor, it was clear that she felt that a) the Q&A session had gone extremely well to that point and b) maybe she should end the session before Dave misbehaves in front of the president of the company on her watch. Admittedly, she was probably right.

Case in point: during our tour earlier that day of EMD Serono’s patient helpline facility, MS LifeLines (www.MSLifeLines.com), we got to meet—and question—a number of staffers, from reimbursement/copay experts to certified MS nurse specialists. When one of the nurses, who had spent countless hours to become certified, was describing the lengthy process, some wiseacre piped, “So basically you had to complete a three question true-or-false quiz.” Nurse, you have been officially introduced to Dave humor. Sorry.

After lunch, the blogging team was presented with a private sneak preview of EMD Serono’s upcoming marketing and communication initiatives. And now I’m being reminded at this time by Laura to keep my pants on, as she does not own a pair of welding glasses, much less a welding helmet. Alas, I can’t talk specifics about their forthcoming social media efforts. But I can say it should serve the MS community well.

Toward the end of the summit, which by all accounts went well for EMD Serono/Pfizer and the bloggers, the organizers asked us what gave us strength—to write down a few empowering words. They then took our words and transcribed them on a banner for our group photo. I seriously doubt any of you can guess all five of mine. And if you detected a whiff of sarcasm in that last sentence, odds are good you won’t miss a-one. (Well, maybe one. More than a few of my fellow bloggers think like me, the nerve.)

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