Using Social Media to Create Social Change
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Transcript of Using Social Media to Create Social Change
Using Social Media
To Create
Social Change
Cause Camp
Friday, February 24, 2012
Why I Started “WTF?”
As a former reporter, PR professional and half-way sensible human being...
...THE STATE OF LUNG CANCER MAKES ABSOLUTELY NO SENSE
This must change!
Why I Started “WTF?”
THIS is the face of lung cancer.
Why I Started “WTF?”
My mom has Stage IV, inoperable lung cancer
She has NEVER smoked
Lung cancer is the #1 cancer killer and the LEAST funded
Lung cancer is no longer just a smoker’s disease
Smoking stigma stands in the way of lung cancer research funding
Bottom line: ANYONE can get lung cancer. ANYONE!
NO ONE deserves lung cancer!
Why I Started “WTF?”
80% of all new lung cancer cases are diagnosed in people who have NEVER smoked or former smokers who quit decades ago
5-year survival rate has remained UNCHANGED for more than 40 years at 15.5%
1 in 5 women and 1 in 12 men diagnosed with lung cancer have never smoked
Only 16% of lung cancer is being diagnosed at its earliest and most curable stage
No early detection screening protocol for lung cancer
Source: Lung Cancer Alliance
Why I Started “WTF?”
Least funded in dollars per death of the four major cancers
Breast
Prostate
Colon
Lung
Total research funding from the National Institute of Health, Centers for Disease Control and Department of Defense (in millions)
Source: Lung Cancer Alliance
Why I Started “WTF?”
“As a doctor and as the sister of Dana Reeve, a woman who never smoked and who died of lung cancer at age 44, I see lung cancer as the biggest unmet women’s public health challenge we face today,” said Deborah Morosini, MD, pathologist and LCA Board Member.
The Out of the Shadows: Report on Women and Lung Cancer presented by Brigham and Women’s Hospital’s Women’s Health Policy and Advocacy Program at the Connors Center for Women’s Health and Gender Biology
Why I Started “WTF?”
People need to be educated on the true facts of lung cancer
Education will reduce the stigma
Reduced stigma will lead to more awareness and funding for lung cancer
SOMEONE needs to tell this story in a different way!
“WTF?” (Where’s the Funding) for Lung Cancer?
Yeah, you get the double-entendre!
Personal, politically incorrect social media campaign
Launched Facebook Fan Page, Twitter profile and blog in October 2009
1,000 Facebook fans in less than a week
3,000+ fans in 6 months
6,000 fans today
But quality over quantity ALWAYS.
“WTF?” Yep, That’s What I Mean!
That “different” way is all in the name
Double-entendre to cut through the clutter, be relevant and attract attention
For those who don’t “get” the double-meaning, the messaging is still on target
Seriously, “Where’s the Funding?”
AAMOF – As A Matter Of Fact AFAIK – As Far As I KnowAFAIC – As Far As I’m ConcernedAFAICT – As Far As I Can TellAFK – Away From KeyboardASAP – As Soon As Possible ASL – Age,Sex,Location BAG – Big @ss GrinBAK – Back At KeyboardBBL – Be Back LaterBF – BoyFriendBFD – Big Fricken DealBITMT – But In The MeantimeBOT – Back On TopicBRB – Be Right BackBSEG – BIG Sh*t Eat’n GrinBTW – By the wayC4N – Ciao For NowCRS – Can’t Remember “Stuff”CU – See YouCUL8R – See You LaterCWOT – Complete Waste Of TimeCYA – See YaDIY – Do It YourselfEOD – End Of DiscussionEZ – EasyF2F – Face To FaceFAQ – Frequently Asked QuestionsFBOW – For Better Or WorseFOAF – Friend Of A FriendFOCL – Falling Off Chair LaughingFWIW – For What It’s WorthFYA – For Your AmusementFYI – For Your Information/ga – Go AheadGAL – Get A LifeGBTW – Get Back To WorkGF – GirlfriendGFC – Going For CoffeeGFETE – Grinning From Ear To EarGMTA – Great minds think alikeGR&D – Grinning, Running & DuckingGTG – Got To GoGTGTTBR – Got To Go To The BathroomGTRM Going To Read MailGU GeographicallyUndesirableH8 – HateHAND – Have A Nice DayHHOK – Ha Ha Only KiddingHTH – Hope This HelpsIAC – In Any CaseIAE – In Any EventIANAL – I am not a lawyerIC – I SeeIDGI – I Don’t Get ItIMCO – In My Considered OpinionIMHO – In my humble opinionIMNHO – In my NEVER humble opinionIMNSHO – in My Not So Humble OpinionIMO – In My OpinionIMPE – In My Personal ExperienceIMVHO – In My Very Humble OpinionIOW – In Other WordsIRL – In Real LifeISP – Internet Service ProviderIYKWIM – If You Know What I MeanJIC – Just In CaseJ/K – Just kiddingKISS – Keep It Simple StupidL8R – LaterLOL – Laughing Out LoudLMAO – Laughing My Arse OffLMFAO – Laughing My F*cking Arse OffLTNS – Long Time No SeeMorF – Male or FemaleMTCW – My Two Cents WorthNBD – No Big DealNRN – No Reply NecessaryNTK – Need To KnowONNA – Oh No, Not Again!OTOH – On The Other HandOTTOMH – Off the top of my headOIC – Oh I SeeOTF – On The FloorOLL – Online LovePITA – Pain In The @ssPLS – PleasePSTFU – Please…Shut The Fluck UpPU – That Stinks!REHI – Hello Again (re-Hi!)RL – Real LifeROFL – Rolling On Floor LaughingROTF – Rolling On The FloorROTFL – Rolling On The Floor LaughingRSN – Real Soon NowRTDox – Read The DocumentationRTFM – Read The Frickin’ ManualRUOK – Are You OK?RW – Real WorldSNAFU – Situation Normal All Fouled UpSO – Significant OtherSOL – Smiling Out Loud (or Sh*t Out of Luck)TANSTAAFL – There Ain’t No Such Thing As A Free LunchTAFN – That’s All ForNowTEOTWAWKI – The End Of The World As WeKnow ItTMI – To Much InformationTTFN – Ta Tah For NowTY – Thank YouWEG – Wicked Evil GrinWTF – What The F*ckYW – Your Welcome
How and Why the “WTF?” Community Continues to Grow.
My Theory: PEEP
Passion for Change
A new voice giving lung cancer survivors another voice for creating change through passion for the cause
Engagement
Daily dialogue, feedback, updates, links, etc.
Someone dedicated to the cause
A sense that “finally someone is listening to lung cancer”
How and Why Has the “WTF?” Community Grown So Quickly?
Empowerment
Arming “WTF-ers” with tools, ideas and confidence that empowers them to take charge and/or participate in creating change.
Progress
Continuously thanking and updating supporters on the fruits of their labor
Keeping “WTF-ers” Engaged
Blog posts regarding my mom’s journey that members can relate to
New campaign challenges
Photo albums/Upcoming events
Hard news/investigative reporting
Offer text and resources members can simply copy and paste to help spread the word
Keeping “WTF-ers” Engaged
Photo Albums, Campaigns, Stories!
– “ANYONE Can Get Lung Cancer”
– “Fighting & Uniting Against Lung Cancer”
– “How to Spell ‘WTF? 4 LC?’
– “WTF?” Merchandise
Keeping “WTF-ers” EngagedPhoto Petition Campaign
Group Card for Congress
Group Card for Congress
Group Card for Congress
Group Card for Congress
Group Card for Congress
Social media-friendly card people can sign, add photo and a brief statement/story
Card makes a collective statement that lung cancer needs to be a priority
More than 500 signatures/stories
Created a “book” of the card to give to my Congresspeople while storming Capitol Hill
Group Card for Congress
Meeting with Charlie Ellsworth, Senator Ben Nelson's Legislative Assistant
Tessie Abraham, Counsel to Congressman Lee Terry
Keeping “WTF-ers” Engaged
Video: Dear Mr. President: A Beer & 15 Minutes
Keeping “WTF-ers” Engaged
Interview with Desperate Housewives’ actress Kathryn Joosten
Keeping “WTF-ers” Engaged
Interview with ABCs Sam Donaldson
Keeping “WTF-ers” Engaged
Live WTF? Ustream Show
Removed SU2C Smokin’ T-shirts
“Smokin' isn't cool. It isn't sexy. And it sure isn't smart. It is, however, responsible for 90% of lung cancer. So stand up, take a deep breath and give your all to fight all cancers. That’s not just smoking, it’s hot.”
Promoting “Smokin” merchandise – with wrong statistic!
Perpetuated smoking stigma
Advocates got T-shirts removed!
SU2C Lung Cancer BitActors Eric Stonestreet and Jim Parsons did a “comedy” bit about lung cancer
My mom (and others) did NOT find it funny
Wrote blog post about my mom’s letter to SU2C
Encouraged others to write to SU2C & forward blog post
SU2C Lung Cancer Bit
Received “canned” email response
“We’re sensitiveto the issues that arise when discussing cancer; in fact, our show writers include cancer survivors.
Taking that into account, we know that dealing with and talking about cancer involves many emotions, including having a sense of humor.”
(portion of response)
SU2C Apology
Received personal apology from Tom Chiodo
Sr. VP, Business DevelopmentEntertainment Industry Foundation
Stand Up 2 Cancer | iParticipate
SU2C Apology“I am a senior member of the Stand
Up To Cancer communications team, and a cancer survivor.
I want to apologize that we offended you and other viewers with the telecast’s lung cancer segment and then with our reply to some of the emails we received.
I want to reach out individually to everyone that wrote to us. We take all the feedback we’ve received to heart, and going forward, it will help inform our decision-making process about the content we produce.”
– Tom Chiodo
(portion of response)
WTF? Impact & Voices Lead to Bigger PR Opportunities
SU2C Guest Blog Post in November - “Lung Cancer Awareness Month”
WTF? Impact & Voices Lead to Bigger PR Opportunities
Huffington Post Impact Section Feature Story
WTF? Impact & Voices Lead to Bigger PR Opportunities
LIVESTRONG Guest Blog Post in November - “Lung Cancer Awareness Month”
WTF? Impact & Voices Lead to Bigger PR Opportunities
Finalist in Mashable's 4th Annual Mashable Awards for “Most Creative Social Media Campaign”
Why I Don’t “DO” Status Quo and Why You Can’t Afford to Either!
My mom is living scan to scan…until her body can no longer handle the treatments
This should NOT be the case
Lung cancer should be a treatable, manageable chronic disease
I won’t stand for it
None of us can afford to stand for it
Why I Don’t “DO” Status Quo and Why You Can’t Afford to Either!
Lung cancer can come to your house – AND the White House - just as easily as it
came to mine
I'll be back Mr. President!
None of us can settle for status quo!
Shameless Plug
Crowdfunding campaign to launch “SMAC! Sock Monkeys Against Cancer” coming soon!
All cancer patients deserve a constant and lovable SMAC! Monkey to help them through their journey to SMAC! that dang cancer!
Some major SMAC! Monkey mojo is on its way. Get ready for SMAC! Nation.
Links to “WTF?”
“WTF?” Blog
Facebook Fan Page
YouTube
Google+
Flickr
Connect with the “Non Lung Cancer” Mehttp://thatis.me/jennifer/
Using Social Media
To Create
Social Change
Cause Camp
Friday, February 24, 2012