Monday, October 1, 2012

BLOGGING WITH LOVE: HERE'S HOW .....

Who's in on the hashtag game?  Personally, I want to #ReThinkPink and I  **think**  perhaps I will see how that hashtag plays out.....

Today, I will be at Panera getting Pink Bagels.  Why?  Panera is among the good guys.  They keep the money in the community.  I know that they are supporting the folks on Long Island that are part of NBCC and they are supporting Cold Spring Labs where they conduct high risk, high reward research AND they are supporting two local coalitions that serve women in the community.  They chose wisely, they donate generously.  All pink is not created equally and NOT all pink is bad.

Southern California locations will donate a portion of the proceeds to DSLRF and today, the Dr Susan Love Research Foundation should be the HIGHLIGHT of every conversation.  EVERYWHERE. As in, all over the globe everywhere.  Before we start the Pink Wars (my gloves are already on and I've already got plenty to say about what went on in Vegas over the weekend at Tao), let's first JOIN together to Make Breast Cancer History.

Today, I Blog with Love.  And I do it not only because it's October 1st and not only because there are BIG things happening at the DSLRF but also because Dr. Susan Love is out of the hospital and on the mend.  As promised, she will be back making noise.  Let's give her something to work with.    

The Health of Women study officially launches now.  HOW is NOW.  And HERE is HOW:


Are you like me?  Do you need to know every last detail despite the fact, in my own case, not only will I forget the details, I'll forget the big stuff, too.  Here's a link to the FAQ's.

I'm going to cheat and steal the words from Dr Susan Love's blog to explain exactly what is going on and precisely why I hope each and every woman who is reading this blog ANYWHERE in the world will join the study by clicking on that link. DE-IDENTIFIED DATA.  That's the part you need to know.  Your personal information can not be linked back to you by anyone except the wizard in charge of two separate data bases.  It's like the safe deposit boxes in the bank.  Two keys are needed and they in the possession of two different people.  Same concept.  No Worries.

THIS year, kick off Pinktober by actually DOING something.  Did you post something about loving a person with cancer on Facebook?  Did you mourn the loss of someone close to you because of cancer?  Join the study.  Tell others about the study.  I already did the first module.  Beta version.  Proudly.  

This is a groundbreaking initiative and this is something in which ALL women may participate.  And I mean ALL.  Log on, sign up and start talking.  We must start to be our own advocates and we must begin advocating for each other.  Together. I'm willing to bet good money as more women are willing to share their information, some common threads may begin to emerge.  The threads will spark an idea and we will begin to see that meaningful research I have been hoping for, waiting for.  I'm tired of waiting and in the words of the wisest:

"We are not going to Hope our way to a cure."

You want The Cure?  THIS is HOW.  In the words of Naz Sykes:

News from the Executive Director
I am thrilled to let you know that the Dr. Susan Love Research Foundation, in partnership with the Beckman Research Institute, is officially launching the Health of Women (HOW) Study!
The road to the launch of the HOW Study has been long. It took us more than three years to plan and develop this special study, and we could not have done it without your support. Many of you participated in our pilot for this project in 2009, providing invaluable feedback. Now, the official unveiling of the HOW website is here, and we are thrilled to finally be inviting women from throughout the world to take part in HOW—the only online study open to all women over the age of 18, with or without a history of breast cancer.
HOW is dedicated to asking the questions about breast cancer that researchers and you want answered. The technological advances that have transformed how we communicate in the 21st century have expanded what is possible in research and medicine. Through HOW, we are using these new technologies to answer age-old questions like: What causes breast cancer? Who is at risk? How can we prevent breast cancer from occurring?
To answer these questions, HOW will follow breast cancer survivors (women and men) to identify predictors of survival as well as short- and long-term treatment related side effects. HOW also will study women (and men who are at high risk of getting breast cancer) who have not been diagnosed with breast cancer. This will help us gain insights into why the majority of women diagnosed with this disease have none of the known clinical risk factors, and allow us to identify new ones.
Importantly, HOW is not only for or limited to learning more about breast cancer in the United States. HOW is the first-ever global online study designed to examine causes, treatment, and prevention of breast cancer. To make this possible, HOW can be accessed online through any desktop computer; and soon it will be accessible from your mobile phone—making it easier for anyone, and everyone, to be part of the study.
Earlier this year, we had the opportunity to tell editors at many of the leading women’s magazines about HOW, and they were nearly as excited about it as we are. So keep an eye out for articles about HOW in the October issues ofGood Housekeeping, Glamour, Prevention, Women’s Health, and more.
The HOW Study is about all of us, and how our data and personal health information can give us a better understanding of breast cancer. We can’t do this study without you, so go to www.healthofwomenstudy.org and sign up today. And tell your family members and friends to sign up too.
In order to continue to do important, revolutionary studies, like HOW, the Dr. Susan Love Research Foundation needs your financial support more than ever. To make a donation to support HOW and our other research projects, click here.
Sincerely,
Naz Sykes
Executive Director
P.S. I am also thrilled to report that Dr. Love has had a successful bone marrow transplant and is on the road to recovery. She is feeling great, and will be back blogging very soon!


Note to Naz:  I hope you took the suggestion of the commenter and plan on submitting this for presentation in February. Also hope it's a panel discussion and remember, I love listening to myself talk.  And I especially love a microphone.......The deadline is today.  Just sayin' ....

Note to everyone else:  Did you join yet?  NO??  Why the hell not.... Just Do It.... Make a difference.  You've been shown HOW.  No excuses.  













12 comments:

  1. Thanks for the quick link and the inspiration to get signed up for the HOW study AnneMarie! I am signed up and just checked in again...the number signed up had gone up about 150 in the last couple hours. We can do better! One conversation at a time, one blog post at a time, one Facebook post at a time, one tweet at a time, one email at a time. The word is getting out! Thanks!

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  2. I blogged with Love and signed up too!

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  3. I just finished my Blog with Love, which of course was filled with much "down with Komen" sentiment! I forgot about the Panera bagels -- thanks for the reminder.

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  4. I just completed the first questionnaire. I will be promoting HOW on my blog later today.
    xoxo

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  5. So... thank you to the sixth power.... And for sending out the ripples...

    I have messages for each of you which I'll post later... right now... I'm dealing with the good detectives in Texas who are hunting down the identity thief. Good story coming....

    xoxox

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  6. Tell the detectives you have a wingman (wing woman?) in Texas who will happily reclaim your license, credit card, and whatever else those jackasses stole from you. Oh, how they picked the wrong girl to mess with!

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    1. Thanks, Nancy! Top Gun revisited...... Women kick ass style.... !!!

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  7. Replies
    1. I would LOVE it if you reblog it!!! That's the goal.... let's keep getting the word out!!!!! Tell EVERYONE to reblog it...

      Giant hugs...

      xoxox

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