Regarding the May 26th FDA Eteplirsen Decision

On April 25, 2016, the FDA Advisory Committee (Adcom) met with the Duchenne Muscular Dystrophy (DMD) community to discuss eteplirsen, a drug in clinical trials which addresses a very specific segment (exon 51) of the DMD population, regarding accelerated approval by the FDA.  Originally scheduled in January, a huge snowstorm hit DC so the day long event was cancelled at the last minute and many attendees had to travel back to DC in April. This Center for Duchenne Muscular Dystrophy at UCLA video does an excellent job summarizing the issue and is worth watching.  The FDA will make its final ruling on accelerated approval on May 26th; I am writing to support universal availability of eteplirsen.

 

My ex-husband used to joke I’m not a doctor and don’t even play one on TV.  He’s right, of course, but here’s what I do know:

  • Most people only pay attention to things that directly affect them. After years of watching the Jerry Lewis MDA telethon, I assumed progress in the treatment/drugs for those affected.  Not true.  After decades of research, the drug that most US patients are given is prednisone. What does this do?  Reduces inflammation, stunts growth, promotes weight gain, and makes bones extremely fragile and prone to breaking.  It does not address root causes, major symptomatology, or delay the disease in any way, shape, or form.
  • Muscular Dystrophy, as a category, is composed of many different neuromuscular diseases (linked here), which is part of the difficulty in finding effective treatments due to the huge variability within strains.
  • Even within Duchenne, it depends on which deletion the child has that determines the rate and severity of the disease.
  • Doctors take the Hippocratic Oath stating they will “Do No Harm.”
  • The FDA was formed to protect the general US population from anything that could cause harm or death.
  • DMD is a death sentence to everyone who has it; it is the deadliest form of MD which eventually affects all voluntary muscles, including the heart and lungs in its late stages.  Life expectancy is currently estimated up to 25, but many kids die in their late teens to early twenties.
  • There needs to be a new drug approval process created for fatal diseases, because the original intent/purpose of the FDA becomes irrelevant in these cases.
  • Random sampling is a market research and clinical method of eliminating bias so that a small group accurately represents a larger population, from which conclusions can be drawn.  In the case of disease, God is the random sampler.
  • Clinical trials always contain a control/placebo group.  For fatal diseases, this is tantamount to cruel and unusual punishment.

What I don’t know:

  • Why the FDA’s focus is on the small sample size rather than the stringent study criteria which created that small n/base?
  • Why the FDA has yet to approve a drug for DMD specifically, and the majority of MD diseases in general?  Does it make sense to anyone that there are more drugs for ED than MD?
  • Why the FDA doesn’t recognize the need for an improved process when dealing with drugs targeting fatal diseases?
  • Why it’s become a debate about emotion vs. science?

Why I care:

Andrew as Rochester MDA Ambassador

Andrew as Rochester MDA Ambassador

In 2003, my sister’s grandson through marriage (her step-daughter is his biological mother) was diagnosed with DMD on his sixth birthday.  Here’s a picture of Andrew (in red shorts) in 2004 when he was the local Rochester MDA Ambassador, with a group of DMD boys.  At this point, he can walk, run and do everything an average six-year-old can do, but with less strength.  The only thing that identifies him as a DMD kid are his large calves, which are a DMD marker (which our family did not know before his diagnosis).

Christopher and Andrew walking together

Christopher and Andrew walking together

 

 

On the right is a photo of Andrew and his older brother Christopher, who does not have DMD, walking together in 2004.  DMD is either passed on from the mother or can be a spontaneous genetic mutation.  In Andrew’s case, his mom had no way of knowing she was a genetic carrier.  She was an only child.  Her mom came from a large family, but none of her maternal uncles or cousins have DMD.  Her dad was one of two children, did not have DMD, and his sister never had kids.

 

In 2008, Andrew went to Florida on a “Make A Wish” trip – here’s a photo of him and Christopher playing in a hot tub.  At this point, he’s in a wheelchair (can no longer walk), but has full use of his torso, arms, hands, etc.

Andrew and Christopher playing in FL on "Make A Wish" trip

Andrew and Christopher playing in FL on “Make A Wish” trip

 

My sister built a wheelchair accessible home, and in 2008 retired early to become his full-time care taker.  Andrew lives with her, and his parents spend weekends with him.  She’s worked with Greece Central Schools so that he can receive a mainstream education. Andrew has acted in school plays, been the manager of the Greece Thunder hockey team, tweeted game scores until he couldn’t do it anymore, announced games, etc.  He’s been as active in high school as he possibly can be.  His parents, avid hockey fans, and season ticket holders for the Amerks, Knighthawks, and Rhinos, take him to most Rochester weekend games.

Andrew with some of the Greece Thunder Hockey team members.

Andrew with some of the Greece Thunder Hockey team members at a MDA event.

Andrew is now 18 years old and graduating from Greece Athena High School in June.  This is a major achievement – only a minority of DMD kids graduate from a mainstream school.  My sister has enrolled him in clinical trials; a few years ago they traveled to Columbus for a drug trial.  She has applied for every stage of the eteplirsen trials over the past four years, but Andrew has consistently been denied due to his lack of mobility. This is hard / frustrating / maddening, because this drug represents the hope he could maintain use of his hands and possibly regain some arm use. (He hasn’t been able to feed himself for over a year.)

On May 5, Andrew was inducted into the Greece Youth Hall of Fame. He said to his grandmother, “Nana, I don’t know why I was included; most of those kids had a parent die … I have my parents and you.”  He doesn’t recognize the strength, courage, determination, and tenacity it has taken for him to do what able-bodied kids take for granted.  He’s been on honor roll the majority of his middle/high school career.

Recent photos from his Youth Hall of Fame induction:

2016 Greece Youth Hall of Fame Poster

2016 Greece Youth Hall of Fame Poster

Andrew with his mom, dad, and nana

Andrew with his mom, dad, and nana

As his aunt, it’s very hard for me to understand why this has become a debate about emotion vs. science.  The drug has proven effective for the kids who have been on it, with no ill side effects.  It’s insulting to read about “emotional DMD families.”  I wonder if the same was said of the mothers who created Mothers Against Drunk Driving (MADD), who ended up changing DUI laws?  Did the same people tell Nancy G. Brinker, sister of Susan G. Komen, who started her foundation to fight breast cancer after her sister died, that she was just being emotional?  Pat Furlong, the founder of the Parent Project Muscular Dystrophy, who lost two sons to DMD, harnessed her grief to help other DMD families.

Oprah has a column in her magazine called, “What I Know For Sure.”  Here’s what I know for sure:  No parent ever wants to lose their child.  It doesn’t matter if that child is 5 months in utero, 5 days old, 5 years old, 15 or 50 years old.  No parent wants to outlive their child; it’s a universal law of nature.  I’ve been in a hospice room with a 76-year-old father crying over his 47-year-old daughter’s dead body after a long battle with breast cancer.  I’ve received a voice mail from a 70 something year old mother (a survivor herself), informing me her 47-year-old daughter lost her battle with breast cancer.  This universal truth should not require explanation.  Calling DMD families “emotional” is unacceptable.  Many families aren’t lucky enough to have someone like my sister who can devote their life to the cause – for most, both parents work and care for other children, while caring for a DMD child.

As a market research manager, I understand the need for testing rigor. As a human being, I understand the need for a compromise in all fatal disease cases like this. My proposal:

  • Have lawyers create an agreement whereby a DMD family (or DMD adult over 18) can sign to relinquish the right of holding any prescribing physician, participating hospital, pharmaceutical company, or the FDA, from responsibility for any harm incurred during a clinical trial.  There are lawyers who create pre-nups, NDAs, golden parachutes, and hush-hush agreements; surely there’s a legal way for families or people to say, “I will not sue you if you let my child (me) take this drug and harm comes to him (me).”  Particularly for the DMD population over 14, after which age many kids begin to die.
  • Create a universal trial for everyone with this DMD deletion without any mobility criteria.  Every state would have at least one participating hospital so people don’t have to travel out-of-state.  The kids eight and under get the 30 or 50 mg dosage.  Larger and older boys get a 75 to 100 mg dosage.  The control group becomes the segment taking the original 30 or 50 mg dosage; the higher dosage group becomes the test group.  It seems, from my limited vantage point, trial participation criteria has been way too stringent given this is a known fatal disease.
  • Open the drug, which has shown improvement and caused no ill side effects, up to the entire population who may be able to benefit from it. Then track results by age, by dosage, by any other data point you want:  weight, mobility, location, etc.  What would be the harm?  The FDA’s main premise is that the study’s base (or n) is too small. This is disrespectful to the hundreds of DMD kids who have tried repeatedly to join this trial but have been unsuccessful because they’re ‘not ambulatory enough.’ If the FDA wants a larger sample size, the DMD community is ready, willing, and able to provide it. The benefit would be to provide plenty of data to confirm, without a doubt, eteplirsen helps create dystrophin and maintain mobility longer across all groups, while giving the current DMD population benefits starting right now.

When it comes to Andrew, we do not expect him to walk again. We want him to take eteplirsen to keep mobility in his hands.  It would be a miracle if he regained use of his arms enough to feed himself and shake someone’s hand.  Had it been available in 2003, he would not be where he is today.

Andrew and Christopher with Rick Jeanneret, Sabres announcer

Andrew and Christopher with Rick Jeanneret, Sabres announcer

A few months ago, my sister and I were talking about Andrew going to college.  He would make a great hockey announcer. He’s grown up watching it (his brother has always played), has a great voice, and is passionate about the game.  When I visit, he’s often on YouTube and will say, “Aunt Karen, come watch this sick hit!”  When I told my sister she was pressuring him too much about going to college full-time, her reply cut through me: “What am I supposed to do, Karen?  Should I tell Andrew, ‘Ok, you’ve graduated HS. Now it’s OK for you to lie in bed and wait to die.’?”

So FDA, I ask you: What are DMD families supposed to do?  Should we just sit around and wait for our children to die?

The late, great Maya Angelou said, “When you know better, you do better.”  Doctors, researchers, and families have provided all there is to know; it’s time for the FDA to do better.

Andrew, this is my post for you, and for all of the DMD boys before and after you.  Little Boi, I love you so much.❤❤❤

Update:  On May 25th, the FDA informed Sarepta, the pharmaceutical company producing eteplirsen, as well as the Australian researchers who developed the drug, they would be delaying their approval decisionNo date has been established for that decision.

Margaret Mead

 Please sign this Change.org petition asking Congress to mandate FDA approval.


Foodies, Bloggers & Brands Create Magical 2015 Food and Wine Conference

Family Foodie and me

Family Foodie and me

Prologue:  In July 2011, I was talking with a woman about social media at a networking event when I asked, “Are you @FamilyFoodie?” Her eyes flew open wide and she replied, “Yes! How did you know?” I answered, “I don’t know (because her Twitter image was a chef’s hat then), but I follow you.” Her eyes got even bigger and she asked, “You DO?” I replied, “Yes, you have like 7K Twitter followers!” (She was a local Tampa Twitter rock star imho.) She said, “I know.” “So what are you doing here?” I asked. She looked at me quizzically. Later I remarked, “Think you’ve found your next thing with Family Foodie.” No truer words were spoken. In 2011 she started familyfoodie.com. In 2012, she created an army of bloggers ready to work with food brands to bring families back around the #SundaySupper dinner table via SundaySupperMovement.com. In 2013, she launched her very first Food and Wine Conference. That is tremendous growth (and hard work!) in a very short time, especially while raising four kids. Missed the first #FWCon while moving back home. Missed last year because of other commitments, too, but really wanted to go after seeing all the food in my Facebook newsfeed! So July 17-19, I went, I saw, I Instagrammed/Facebooked/Tweeted, I ate, I learned and I grew!

What is the Food and Wine Conference? To quote the website: “The Food and Wine Conference brings together bloggers, small business owners, winemakers, chefs, PR professionals, traditional media, new media, authors and brands.” For what? To talk about (and eat!) food & wine, to discuss what they’re doing and how they’re doing it, to create road maps for success, and ultimately to work together in win-win scenarios. It’s a beautiful thing.

View from my room at the Rosen Shingle Creek resort

View from my room at the Rosen Shingle Creek resort

Speaking of beautiful, Rosen Shingle Creek Resort is that and much more. Have you ever heard if you’re doing the right thing everything will just serendipitously fall into place? One day Isabel and her best friend Lou Anne went there for lunch, they met Mr. Harris Rosen, and a beautiful business relationship was born. It is a stunningly gorgeous conference center and resort, with top-notch chefs, and it’s an absolutely perfect setting for #FWCon! Their customer service is excellent.

Here’s a fun Good Day Orlando video taken Friday morning before the conference, which shows just a few of the goodies we experienced over the weekend.

The food. The wine. Bring an eating buddy! You just can’t eat it all, and it is *ALL SO GOOD!* One thing I learned: Get your food first, talk later. I spent too much time talking Friday night and missed yummy things I wanted to try!

Saturday was jammed packed. The opening Keynote: “Everything is Subject to Change” was about how life and careers are a journey where one thing definitely leads to another, especially in retrospective. Think of your own and you’ll connect the dots between people and places and how one leads to the next.

If you think bloggers are just “little women who love food and want a part-time job” then the session with Liz Latham from Hoosier Homemade and Stephanie Parker from Plain Chicken might change your mind. Liz and her husband both quit their FT corporate jobs to work the blog, which fully supports their family. Liz and Stephanie discussed the need to create a LLC for your blog, work with lawyers to trademark your logo, use Quickbooks, and covered all financial aspects of running a successful blogging business.

Lunch was sponsored by Wisconsin Cheese and Idaho Potato: *POUTINE* in four different varieties!! Here’s when I discovered I needed an eating buddy. #FirstWorldFoodieProblem: I want to try everything, can’t eat three lunches, and hate wasting food!

Kale & Spinach Poutine in Mushroom Gravy with Three Cheese Sauce

Kale & Spinach Poutine in Mushroom Gravy with Three Cheese Sauce

My two favorite sessions after lunch were panels. The first was brands discussing working with bloggers. The brand reps really impressed me with their honesty: “Please don’t send me a pitch telling me how great your blog aligns with our Beef brand, but then I can’t find one blog post with beef in the recipe, but do find “I hate hamburger” in your ‘About’ section.” (News flash: Hamburger is beef!)  They were as down-to-earth as the bloggers, and very real about their connection to their product, their audience, and their bloggers. I learned not all brands are created equal when it comes to bloggers: Some use them as an extension of their marketing team, others use them sparingly. It’s all about finding ones that best fits you and your blog.

My other favorite panel was Eat.Travel.Blog.Business, which was a panel of travel bloggers. Sounds heavenly, right? To travel about, eat, stay at beautiful places, post and write about it? It’s a lot more work than you think and not really just lounging by the pool with a cool drink! Ann Tran, who was a part of the social media panel, recently tweeted “How to Make $150K as a Travel Blogger” which drives the point home that blogging can be “a real job.”

After a very fun live rendition of “The Price is Right” with Saucy Queen Michele Northrup, we had a bit of time before dinner.

Hess Collection wines served with Certified Angus Beef meal

Hess Collection wines served with Certified Angus Beef dinner

Saturday night dinner sponsored by Hess Collection wines & Certified Angus Beef

Saturday night dinner sponsored by Hess Collection wines & Certified Angus Beef

Ah, dinner. Nothing says you’re about to dine well like multiple wine glasses lined up at your place setting!  After food all day (most of it not shown here), we sat down to a family style dinner of Certified Angus Beef with roasted garlic, asparagus, collards, fingerling potatoes and the most heavenly whipped sweet potatoes. Here’s a photo of my first plate. (Yep, you read that right!) Later, I just spread the roasted garlic like butter on top of the beef. #PleaseSirCanIHaveMore While I enjoyed all three of the Hess Collection wines, the Hess Treo really stood out and was scrumptious with the beef. #YesPlease [Wait, is there a job where you get paid to be a professional eater? I may have that one covered hands down!] I didn’t have room for dessert, so enjoyed watching folks do the Idaho Potato Spuds singing game while being taped, which was hysterical fun. But when the blogger I roomed with told me Rosen had made the top two winning recipes from the Dixie Crystals blogging contest for dessert and I missed Tiramisu, one would think I hadn’t eaten all day! I was truly sad. #FirstWorldFoodieProblems

Cabot & Hess Pairing

Cabot & Hess Pairing

Sunday was at the Rosen College of Hospitality Management, right next to their resort. The sessions were like classes, where you picked from four for any given time period. The problem? Some sessions I wanted to go to three of the four!  I ended up in the Cheese & Wine Pairing sponsored by Cabot and Hess Collections. Thought I already knew a lot about cheese; I was wrong. Did you know cheese is graded in some of the same terms as wine is (acidity, fruitiness, etc.)? And that different cheeses with different wines can make one or the other taste really bad? I learned that and a lot more.

Beef ... It's What's For Dinner!

Beef … It’s What’s For Dinner!

My other favorite session on Sunday was sponsored by Certified Angus Beef, where we saw a live demo with Chef Michael Ollier and got some great advice on preparing beef. #1 tip: Do not cut meat while cooking to see if it’s done! Use a meat thermometer to reach the desired state of doneness (130 before resting for medium rare).  Another great tip is to sear both sides quickly to seal in juices, and then finish cooking slowly.

Live Cooking Demo

Live Cooking Demo

I loved my three days at the 2015 Food and Wine Conference! Why? Because I saw people sharing best business practices, learning a great deal about food and wine, and celebrating their entrepreneurship, regardless of where they are in the journey. Learned I really need to up my photography game if I ever want to make money from a blog!  What a lot of people don’t realize about blogging is you have to know and do everything: from web technology/platforms, to social media, to marketing, finances & accounting, and everything in between. If you want to learn how, and talk to people who are doing it, then plan to attend the 2016 Food and Wine Conference because you will meet them, and they will share their secret recipes! I met some truly wonderful people at #FWCon … Foodies are great people!!

Isabel asked, “What was your favorite quote from #FWCon?” Both of mine came from @SaucyQueen: After “Johnny” told every Price Is Right winner what they won, Michele added, “And a bottle of hot sauce!” (Did I mention I love me some hot sauce?)  She also said, “The best advice I can give you is if you have a good idea, ‘Don’t Hesitate!'” Sound advice for life! Bon Appetit🙂

My Facebook Food And Wine Conference Photo Album.

The complete 2015 schedule.


Life Imitating Art Imitating Life

oscars+2015

Every year I watch the Academy Awards, and try to see the movies nominated for Best Picture before the show. This year I saw Selma, The Theory of Everything, Boyhood, and Birdman beforehand.  I watch the post-Oscars E! Fashion Police episode too because, let’s face it, the Oscars are as much about fashion, hair and make-up as they are about movies.

After Joan Rivers unexpectedly passed last summer, I wondered what would happen to her show. The new E! Fashion Police launched in January and seemed like a success until the fateful Oscars show. Giuliana Rancic made an inappropriate joke about Zendaya’s dreadlocks (watched it twice and it gave me pause both times), which started a Twitter war. Zendaya was offended and Instagrammed it. Kelly Osbourne tweeted “Don’t put me in the middle. These are my friends. I said not to do the joke.” 

HT_fashion_police_promo_ll_141230_16x9_992

For those who don’t follow entertainment or Twitter, the Oscars were Sunday, February 22; Fashion Police aired February 23; said Twitter war was February 24 – 25; and by Friday, February 27th, E! announced Kelly Osbourne was departing Fashion Police “to pursue other opportunities.”  That’s generally code for got canned, but reports went back ‘n forth: some said she quit, others reported she was asked to leave. Given the intensity of the week, it kind of made sense either way.

The following week I saw some online comments from Kathy Griffin, but it was her March 12th announcement she’s also quitting the show that really got my inner P.I. / psychologist going. Her “I Will Survive” manifesto made me sit up and take notice. To put Kathy’s statement into my own few words, it goes something like: “Hey E! I was successful before I joined your little show and I’ll be successful after I leave it.”  All of this begs the question:  Is something seriously wrong at E!?  With half of the shows’ staff departing two weeks post Oscars, most notably after these women expressed their opinions online, one wonders. Or are these women truly just standing up for what they believe in?

They say “Art Imitates Life.” So what are these movies about and how does it relate to the E! drama? Here’s my take:

selma-movie

The planning and filming of Selma, a movie about the historic civil rights marches from Selma to Montgomery, began before Michael Brown got shot in Ferguson, MO, last August. This tribute was in the works long before the protests and riots in Ferguson; before #Ferguson and #BlackLivesMatter became lexicons of our culture. An amazing movie, it was nominated for Best Picture and Original Song. If you haven’t heard Glory, here’s a video of John Legend and Common performing at the Oscars; it’s as awesome as the movie and a tear-jerker in itself.  (The fact there are more black men in Corrections today than were slaves absolutely flabbergasts me.) Two weeks after the Oscars, President Obama marked the 50th anniversary of the Selma march on that very bridge with his own speech. POTUS speaks very eloquently; to summarize his half hour speech in my own few words, it goes something like: “People, of course we’ve made progress. If we hadn’t, I wouldn’t be standing here! Do we have a way to go? Yes, absolutely. But we’re still better off than we were 50 years ago. Keep fighting.” His speech is worth listening to; it’s full of faith and hope and love.

The-Theory-Of-Everything1

The Theory of Everything is a beautiful movie based on Jane Hawking’s memoir: Travelling to Infinity: My Life With Stephen. It depicts Stephen and Jane falling in love in college at the same time his ALS was diagnosed; how she married him despite his illness, bore his children, and took care of him, the kids and the house so that he could do the amazing work he has done. It’s a movie that accurately shows the trials and tribulations of life as a handicapped person and caring for one, particularly with a chronic disease that worsens over time. The movie was nominated for five Oscars: Best Picture, Leading Actor, Leading Actress, Original Score and Screenplay.  Eddie Redmayne won the Oscar for Best Actor.

Boyhood

Boyhood is a phenomenon since it was filmed in intervals between 2002 and 2014. It’s the story of a boy growing up with divorced parents, told from the child’s perspective.  It’s a gritty, too-true-to-life story of a father too young to be a father, and a struggling, single mother who remarries a man who ends up being an abusive alcoholic. After she has the courage to leave him, she gets involved with another man who also turns out to be controlling. The boy tries to successfully navigate growing up among these quite imperfect adults. Boyhood received six Oscar nominations: Best Picture, Supporting Actress/Actor, Directing, Original Screenplay and Editing. Patricia Arquette won for Best Supporting Actress.  Her inspiring acceptance speech is a rallying cry for equal pay.

Her speech was not only in response to her character, but in response to the Sony email leak last November that outlined the disparity in pay among male and female actors. Many cheered Patricia on afterwards, but some complained that actresses make millions and have nothing to complain about.  News flash: That’s why it’s called “Equal Pay for Equal Work” –> it applies regardless of the type of work.

Birdman-3

Birdman is a wonderful movie about a middle-aged actor who was once a huge success, who is trying to return to his former glory. In his journey back, he realizes he still loves his wife and builds a real relationship with his daughter, with whom he’s never been close. Birdman is a movie about never giving up, coming back after adversity, and remembering what is truly important in life after your ego gets out of the way.  It received nine Oscar nominations and won four: Best Picture, Best Director, Cinematography, and Original Screenplay.

Each in their own way, these tremendous movies boil down to two things: Love and Sacrifice. But if I were to hashtag them, they’d be: #BlackLivesMatter, #HandicappedPeopleMatter, #WomenAndChildrenMatter, #MiddleAgedPeopleMatter.

Courtesy of Dr. Wayne Dyer

Courtesy of Dr. Wayne Dyer

Anyone who works in marketing, market research, politics, TV ratings and other big data analysis, knows that the world is often sliced and diced into: age, gender, race, education, income, religion, geography, sexual preference and anything else folks think may be important to a buying, voting or watching decision. It might make ‘business sense’ but it’s a soulless way to interact with people.

It’s these categorizations and stereotypes that permeate society to create underlying and unconscious biases. Soccer mom, anyone? One could suggest Birdman won Best Picture because the majority of Academy voting members are over 40. Or Patricia Arquette won because America loves its long-suffering single mother who will do anything to raise her kids. All you have to do is watch football, American Idol, The Voice, or any other sport or reality show to hear the praises of single mothers being sung often and loudly. Did Selma win Best Original Song because, well, you know, black people grow up singing in church?

Which brings me back to E! Fashion Police. I loved Joan Rivers; grew up watching her on Carson and watched her nip and tuck herself to stay relevant. Some could call her a crusty old broad or tough old bird. Perhaps Joan had a free pass on making inappropriate jokes because of it. Kelly, you’re right, the joke shouldn’t have been told. Kathy, you’re right, you will continue to be successful. Go forth and prosper.  E! Fashion Police, here’s an idea:  Stick to fashion and let the snark go. People will still watch. Just like people kept reading Perez Hilton after he decided to be nice.

9ce4963a644cab6ef0e2981b943adb83

Some who study cycles say we’re experiencing the same cycle of change we did in the 1960’s; 20th century’s decade of the civil rights, women’s lib, sexual revolution, and anti-war movements. In addition to my hashtags above, gay marriage, LGBT rights, mental health awareness, body acceptance and many other rights are currently in the news. Demonstrations on college campuses protesting how rape cases are handled (and dismissed) and the twenty women accusing Bill Cosby of sexual harassment (or worse, rape) are more examples.

If we refocus the lens and zoom outside of the United States, we see the same trends. Democratic uprisings. Malala Yousafzai, the young Pakistani woman who demanded an education, and who won the 2014 Nobel Peace Prize for her work on behalf of women, children and education. In the Middle East, where we’ve been handing out guns like candy for over a decade and training people how to fight; now some of those same people are banding together to make their voices known worldwide to ask us not so politely to cease and desist.

It’s almost like all of those held down are lifting their heads up out of the mud (to quote Teri Garr), raising their faces to the sun like flowers, and saying, “Hey, people! I matter.”


Social Fresh East 2013: Back to Basics Baby

Recently I was lucky enough to attend the Social Fresh East conference for the third year in a row.  I love Social Fresh because it’s an intimate conference (300-400), always features some of the best social business thought leaders, and it’s local. Win. Win. Win.  It was a jammed packed two days! Here are photos and highlights of each speaker (click on their name for deck or contact info):

Courtesy of Stacey Acevero Twitter @sacevero

Courtesy of Stacey Acevero Twitter @sacevero

Tom Webster Social Fresh 2013

Tom Webster of Edison Research spoke first; a bit daunting since the WiFi was down.  His presentation was on data storytelling and the 2012 political elections.  “We don’t need data analysts; we need data storytellers.  There’s too much data repukery.”  (Nice word Tom:) “We are becoming less skilled at being social with people we don’t agree with.”  God’s honest truth and Tom’s clarity was a gut check.  Katie Richman tweeted Tom is where “psychology meets statistics.”

Spike Jones Social Fresh 2013

Spike Jones of WCG World presented Word of Mouth.  “It is not – nor will it ever be – about your product.”  Some brands forget it’s about their *community* as they blather on about their products or themselves.  “Influence can be created; passion can not.” “Everybody wants to be a part of something bigger than themselves.”  Check out slide 44:)

Morgan Johnston Social Fresh 2013

The WiFi came to life during Morgan Johnston‘s Jet Blue presentation.  “Inspire Humanity.” Here’s how JetBlue does social:  Monitor -> Engage -> Inform -> Humanize.  So simple.  He spoke about how they handled Hurricane Sandy, no small feat.  The audience really engaged; not sure if it was because the WiFi came back to life or because a lot of people fly Jet Blue!

Ian Schafer Social Fresh 2013

Ian Schafer from Deep Focus spoke on Mobile First. “60% of active users access Twitter via mobile …”  And then we had our Beyonce Super Bowl moment, when we zapped the power – apparently crashing the entire block.  350 people with phones, laptops and iPads all charging just might trip a hotel’s circuit breaker!  Amazingly, it was back on in about 5 minutes.  Ian’s main message:  “The best mobile ad is a brand’s most engaging content.”

Chris Tuff Social Fresh 2013

Chris Tuff of 22Squared tackled how to achieve ROI via content, analytics and paid:  “Art & Science:  Right content & right people & right time = success.”  Hyper target sub tribes. Value of Impressions: Twitter – 15 mins, Facebook – 1 hr, Instagram – 2 days. Tumblr sticky for 9 days. ROI = Return on Impressions as well as Return on Investments.

Christopher Penn Social Fresh 2013

Last speaker on Day 1 was Christopher Penn, from Shift Communications, who addressed Earned Media.  “Earned media is anywhere people talk about how awesome you are (or aren’t)!” Love Chris’ Marketing Circle of Life (slide 8).  The difference between Owned, Paid and Earned is clearly defined on slide 12:)  The goal: Do social business well, achieve earned media.

Jim Tobin Social Fresh 2013

Jim Tobin from Ignite Social Media kicked off Day 2 by talking about the Power of Organic on Facebook.  “Earn it.  Don’t buy it.”  “Tobin’s Law:  The size of a brand’s network is always smaller than the size of its network’s network.”  Say what?  Simply:  You want the people who are friends with your network to engage with you.  The T-shirt photo below left visually depicts Jim’s concept.  Real success is when you have more shares/interaction from your network’s network than your network itself.

Your friends' friends, babyAdam Kmiec Social Fresh 2013

Adam Kmiec from Campbell’s presented an Insights Driven Organization.  “We’re data rich and insight poor.”  “Strategy, Community Management, Content, and Insights are all required to do social business well.”  Slide 40 is his prescription for success.  Many of the SMB attendees drooled over the idea of having the resources to employ some of the tools Adam uses!

Ted Rubin Social Fresh 2013

Ted Rubin of Collective Bias talked about the Return on Relationships: “Social is just a facilitator of relationships.” “Listen.  Make it be about THEM.  Ask “How can I serve you?”  Aim for ongoing engagement.”  “Relationships are the new currency.”  Based on the number of tweets generated, the crowd really liked Ted.

Ryan Cohn Social Fresh 2013

Ryan Cohn from Sachs Media Group spoke about CEOs and social business. “16% of CEOs are on social — expected to rise to 57% within 5 years!” “LinkedIn is the only platform with more CEOs than general population.”

Chris Brogan Social Fresh 2013

It was my first time hearing Chris Brogan of Human Business Works speak, so I was enjoying Friday afternoon at Social Fresh.  Chris’ basic prescription for success:  1.  How do I add value?  2.  How do I make my buyer the Hero?  3.  How do I equip my buyer for success?  4. How do I attract more audience?  And then build them into my Community?

Jay Baer Social Fresh 2013

Jay Baer from Convince & Convert presented Youtility, the subject of his new book. “If you help someone, you create a customer for life.” “Answer every question via your various forms of content and engagement media.” “Youtility is a process, not a project. The ‘We’re awesome, click here’ is short-term, not long-term.”

Katie Richman Social Fresh 2013

Katie Richman from ESPN talked about creating “reskinnable content.”  “Consumption is less about reflecting who we are … more about who we want to be.” – Paul Mullins.  Loved Katie’s description of Pinterest:  It’s magazine collages 30 years later!

Kevin Vine Social Fresh 2013

Kevin Vine from Dunkin’ Donuts finished the conference on a high note when he spoke about Encouraging User-Generated Content.  “We don’t own our social media channels – our fans do.”  “Listen -> Learn -> Engage -> Celebrate”  “A brand is no longer what we tell consumers it is.  It’s what consumers tell each other it is.” – Scott Cook, Co-Founder of Intuit  “Make your fans and followers Stars.”

Why did I include “Back to Basics Baby” in my post title?  While I recapped 14 speakers in < 900 words (a miracle:), I could have done it in much fewer:  Tell Stories.  Make it About Them.  Humanize.  Mobile, Mobile, Mobile.  Return on Impressions.  Earn It.  It’s about your Network’s network.  Use insights to inform business decisions.  It’s still just all about the relationship.  Make your customer the Hero.  Help someone and create a customer for life.  Don’t reinvent the wheel every time.  Encourage participation; make them Stars.

Here’s how I know Social Media has grown-up into Social Business:  It’s no longer about how to use Facebook or Twitter for business, what the latest and greatest platform is, if you need a Pinterest or Google+ profile.  It’s back to being about your customers and how you can help them move forward.  It’s back to the heart of your business – those humans you call customers.

Speaking of Humanizing, Jason Keath, CEO of Social Fresh, celebrated his birthday around Social Fresh, so here’s a photo of his surprise cupcake.  Happy Birthday Jason and many, many more!

Jason Keath Social Fresh 2013

Another human touch?  The Tweets So Fresh mug I won for being one of two people who’ve attended four Social Fresh conferences.  I love my mug:)  It makes me feel like a Star!

Tweets So Fresh Mug

All photos courtesy of Social Fresh and Spherical Communications


Opportunity

January 30th Small Stone

Courtesy of American Idol Facebook Page

Courtesy of American Idol Facebook Page

Watching Idol tonight I was reminded

why I love that show so much

when Nicki Minaj said,

“All of the stars aligned to bring you here in front of us.”

Truth is, none of us knows if

that email, that phone call, that tweet

blog post, book, song, audition, smile

or chance meeting,

will open the door to our dreams.

Yes, America, Idol or not,

we are still the land of Opportunity!

jan13badgesmall


60 Words

January 28th Small Stone

Truth is stranger than fiction

Looking at the pictures,

watching video,

the truth leaks out

camera lenses:

He’s truly going to miss her.

She, ever the Good Wife,

will continue to stand by her man.

But in her heart she knows

he loves her;

and recognizes it for the gift it is.

All around the world,

truth is stranger than fiction.

jan13badgesmall


Beach Sunset Bliss

January 26th Small Stone

Indian Rocks Beach Sunset

Walking the beach

the sand cold and damp under my feet,

the sun shining on the gentle rippling waves,

kids playing on the beach and in the surf,

people sitting, walking, fishing, talking,

a pelican dives down into the water.

I stop and wait to watch him

tilt his head back and swallow the fish.

Everything he needs is there.

People splashing in the cold water,

seagulls squealing in the background.

I turn back around

as the sun starts to sink.

I am one with everything and everyone;

standing, sitting, watching, walking,

kayakers silently waiting in the water,

all facing due west, gazing

as the sun goes lower.

Everyone at reverent attention

on my beach altar,

silent peace.

We stand and watch it sink,

pink with purple haze,

absolutely beautiful.

Walking back, I come upon

people standing at the water’s edge

facing the set sun,

a man and woman playing guitar and singing.

They sound so beautiful

it makes me cry for some reason.

Everyone praying in their own way.

I watch as we all leave

at peace.

jan13badgesmall