Tuesday, June 5, 2012


Social Media.  An exchange of ideas.  How do we collaborate with others and begin to take those ideas so we may actually formulate a plan and make meaningful attempts to effect change?  Me? I want to change the world.  Yes.  I said "Change The World."  I dream big.  I dream in color.  I dream believe KNOW that collectively we can make a big difference.

I know that individually, we can each do things that may seem minuscule and insignificant to us but to another, our actions might have done something that truly made their day a bit easier.  Or lots easier.  Many might say "Why bother?" and to those I will say, "Why wouldn't you bother?"  I act on things, on a small scale or as part of a larger community because I am fueled by passion.  I am buoyed when I see a person engaging in my most favorite pastime in life: A Random Act of Kindness.  I've been big on this for a long time.  Long before "Pay It Forward" brought tears to my eyes, I took note of those random acts.  And that thought fits nicely with a quote I happen to love:

"To the world you may just be one person, but to one person you may be the world."

There seems to be a spark in the air.  We are challenging each other to share our deepest thoughts and feelings specific to a theme.  Marie's blog has gone viral with everyone sharing their thoughts about the use of the word survivor.  Lori has thrown down yet another challenge and she's asking us to use our words to formulate a plan.  She saw Pink Ribbons Inc and has outlined the most important take away points from her perspective.  I happen to agree with her assessment but let's all remember: We were The Newlyweds at NBCC so technically, we are still in the honeymoon phase of our relationship.  Of COURSE I would agree with her assessment!

Words matter, but actions matter more.  I believe the proper phraseology is, "Actions speak louder than words."  Lori wants us to share what we each believe is the most important action that can be taken to eradicate breast cancer.  Here's mine.

I believe we need transparency in every aspect of the Pink Ribbon Culture.  Transparency with respect to the money being raised and how its being spent and transparency regarding research.  Where is the cutting edge research being conducted and what is being researched?  I don't want to see another penny of my money being funneled to change the compound of a drug that is already effective.  Why?  So I can be nauseous for three hours instead of six?  Ummm, yeah.  Scrap that.

Interestingly enough, finding ways to move from awareness to action was part of a recent chat in which I was invited to participate.  Kathleen Hoffman and RV Rikard conduct a weekly chat and three of us were asked to discuss how we might go beyond awareness.  I was sharing the soapbox with Katherine Leon who is single-handedly raising awareness about SCAD (Spontaneous Coronary Artery Disease) and Katrina Moody who has three autistic children and is trying to mobilize a movement to DO something on behalf of children with special needs including autism and epilepsy.

Katherine Leon wrote a brilliant blog recently and as an aside, shared a story about a short road trip she took with her sons.  Her nine year old BOY observed a car with one of those purple magnet ribbons on the bumper.  He announced to his mom that the guy "doesn't do the breast cancer cure, he's just trying to be swag."  She asked him to clarify and he continued explaining how (let me repeat, a NINE YEAR OLD BOY) people put the pink ribbon on their cars to act cool, but not really to help others.  To him, even that purple ribbon meant "breast cancer with swag."  The ribbon held a negative connotation for this very young BOY.  How does a nine year old boy whose mom's advocacy is in HEART disease, not cancer of any kind, have such knowledge (and wisdom) about The Ribbon?  Tell me again how we need to continue raising awareness.... and yes, that would be a wise-ass-ish comment but this little guy kinda sorta sealed the deal for me.  SCAD needs awareness.  Not Breast Cancer.

By the way, and before I forget....... That earlier quote comes from Brandi Synder.  I did not know about Brandi until I did a search so I could provide proper credit.  I don't like using words of others unless I know whose words they are and I make a specific notation.  I like Brandi.  How can you not LOVE someone whose favorite line is:

"Take me as I am or watch me as I go."

And this is who I am..... part of a community.  Working with others bouncing ideas around so we can move from awareness to action.  Kudos to Kathleen and RV for taking the tweet chat which can be impossibly difficult to follow and capturing the thoughts of all.  Imagine eight people talking at once with possibly three different aspects of a common theme being bantered about.... and you will truly appreciate the beauty of this synopsis.  And the challenge it had to have been to put it together.  The chat is on Thursdays at 8PM Eastern using #hchlitss.  If you do twitter speak.

Maybe this conversation will spark an idea in you to meet Lori's challenge.  What is the best course of action we might take in order to eradicate breast cancer?  Maybe by expanding the conversation to include different points of view with their own unique challenges, something will come to mind.  Social media brainstorming.  At its very best.

This is the text of the blog at Health Communication, Health Literacy, and Social Science

May 17 Action: Beyond Awareness Tweetchat Summary

February is National Heart Health Month, April is National Autism Awareness Month and October is National Breast Cancer Awareness Month.  How do those who are affected feel about these awareness campaigns?

Health Communications, health literacy and social sciences tweetchat invited three health activists to begin to answer this question.

AnneMarie Ciccarella (@chemobrainfog) started the discussion.
Speaking for myself and likely many others, October "awareness" has strangled advances in breast cancer…October breast cancer awareness is the greatest success story causing the MOST damage.  When started, it was important. Stigma attached to br ca had to be lifted. The radical surgeries had to be addressed… That was accomplished fairly early on. Now, it's over 20 years of little **MEANINGFUL** progress and NONE with metastatic patients.  Speaking for breast cancer, we are AWARE, we've BEEN aware and it's time to switch gears. too rooted in status quo & now very hard
                A participant asked, “Why is metastatic segregated out?  Why is there no progress?”
[Those with metastatic disease ]…are the dirty little secret .they taint the ribbon of success.  We've accepted "early detection" as good enough and it's not. No new treatment advances. I had same chemo cocktail in 2006 as mom in 1987.  There is too much resource going to awareness, not enough for actual research.
I also make sure people understand there is NO CURE for breast cancer, it's not a good cancer and even if caught early, there is no guarantee.  

Katrina Moody (@katrinamoody) added to the discussion from the perspective of a mother of 3 children with autism
“We promote Autism, Epilepsy and General special needs-related awareness efforts at the Café  (my site).   
     She was asked if she felt that having a blog was “action.”  
 It's not - which is why I started the Awareness in Action campaign - to focus on ways for people to help.  The problem is that traditional awareness drives tend to concentrate on "awareness" but not so much on acting to help. I think it's the difference between passive sharing and actual engagement.  Too many campaigns with no goals mean that there are lots of fuzzy pictures and sayings, hardly any action.   We still have the fuzzy pictures *grins* but are focusing on goals, actions for those involved to take.  We need to focus on action - help people see where they can take action in small and large ways. 
Katherine Leon, a survivor of Spontaneous Coronary Artery Dissection (SCAD) also described her experiences with Awareness Months.

I have done one Komen Walk, supporedt our school autism efforts, work many hours with WomenHeart: National Coalition for Women with Heart Disease.”  This year, in March, I took heart health awareness to kids at school. Every day is a good day to focus on heart health. 
With SCAD, [we are] attempting to do awareness and action at same time. Social media [is]key. I did awareness 5K for fund raising and a conference .

AnneMarie and Katherine realized that there is a difference between Breast Cancer and SCAD.  
Katherine stated , “Right now SCAD is very grassroots. [We don’t have  corporate sponsors], so [we are] networking [to find]  SCAD survivors worldwide. “  
AnneMarie remarked that she is concerned about the involvement of corporate sponsors in Breast Cancer Awareness Month.   “The pink stuff is all about the companies...  I am determined to change the conversation with breast cancer.  She summed it up, “SCAD needs awareness! We didn't really need pink bats last Sunday, did we?”
One participant thought that  awareness months help find those dynamic people out there that are willing to help.  

Katrina agreed that Awareness Months help in finding people with a newly recognized passion – the key is helping them act!

Another participant noted that, 
"These campaigns are getting so complex and expensive that I'm not sure how much they yield for what's important to patients. I think once "awareness" gets to be a routine yearly thing for each entity, it loses value.  The question is why do we do it. Are we truly not aware enough about breast cancer or autism? I think about the two w/o "months.  And all of the repetition inactivates me!” 

When asked about taking action each guest contributed ideas.
Katherine stated that we 
“Need to tie awareness to research.  SCAD Research is nonprofit educating/promoting/fundraising all at once. I really love RESEARCH.  Bob Alico, director of SCAD Research, says action comes from getting people to think "this can happen to me, [or] to my loved one."
 Katherine initiated research in SCAD over a number of years.  She  motivated the  Mayo Clinic to  conduct research on SCAD.  “WomenHeart Inspire is key to "finding" survivors. SCAD survivors find  [the SCAD] group thru WomenHeart/Inspire, apply to Mayo research, learn about SCAD http://t.co/1tCXWqBE,

It is “Really frustrating when SCAD donations go to the general fund of the A[merican] H[eart] A[ssociation].  When you donate the Key is getting money to researchers, or at least organization with SCAD-specific program.
AnneMarie said, 
“Find out “Who's raising the money, how much is being donated and what is the charity doing? I  began to speak out about not being "a brand" for someone's bottom line.  [I} Got active with Army of Women and Dr Susan Love.  Another thing I am trying to do is get the word out to be wise "consumers" with our donor dollars.
 “I don't think people realize they can donate directly to researchers. I guess that's the way I've been TRYING to take action.  [You] Don't need to give money to any organization to take a cut . For example: they do high risk/high reward research and you can SPECIFY where you want your money to go http://t.co/i0w1T3uE .  This link to Rock Research Labs lets you decide! 
Every major hospital has research areas. If research is what calls you, I know of a number of places that do research.  Here's a blog post I wrote about donating .... http://t.co/dM1O4iwD  Cold Spring Harbor Lab may have a similar program. They do high risk high reward research, too.”
A participant suggested that “if you're donating for research, get name of people doing research. Call and ask where to donate.”

Another participant wondered, “Realistically, unless you have it, a family member has it, or a close friend, do people really care? Will awareness change that?"  

Yet nother participant wondered if doing something for others always means money. 

According to Katrina, “No. ... encouragement and support don't have to always include money - I don't think - on a personal level. Find ways to help patients/families directly, more personal involvement”
AnneMarie volunteers in the hospital visiting surgical patients.   Don't ask "what can I do" Just Do it! Drive people to treatment. Make casseroles  for families.
One of the participants stated that there needed to be an Awareness Month on health disparities. 
“ I'll scream for awareness about them til people are sick of hearing and do something .“If goal is to make life better for sufferers, find out who delivers direct services to pts/families .  I'd rather give money to a social work department fund for transportation, medications, etc.  Find out what keeps people from getting what they need. It's usually something we dismiss or don't realize  The smaller and more personal, the better. transportation, resources, ability to leave an ill family member long enough to get out of house."
The final thought reiterated by all was an admonishment to all of us:

"Don't underestimate your capacity to make a difference. ”

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