Andrea Downing Be Your Own Advocate, Beyond Awareness, BRCA, Data Sharing, ePatient, Precision Medicine

It’s a great time to be a BRCActivist.

What is a BRCActivist? A term that I made up when I decided that “BRCA / Breast Cancer / OVCA Activist who blogs/advocates/tweets/fights for better information for our community” is too much of a mouthful.   And it’s a great time to be one.  Lemme tell you why.

I just came back from FORCE 2014 in Philadelphia.  I have to say that this is the only conference I have attended in my time as a BRCActivist is nailing  BRCA community engagement.  Here are some things they did really really well, and reasons to attend:

  • FORCE offered sessions for women to give feedback on the direction of research.
  • Even though I consider myself fairly up-to-speed on research, FORCE 2014 pushed my level of knowledge and allowed me to talk directly with researchers about BRCA.
  • I attended on a scholarship.  This is all too rare for health conferences and needs to change.  FORCE has been offering scholarships to women within the BRCA community long before it was a thing within the ePatient movement….so for those of you who opted out thinking that you can’t afford to go, you have no excuses!  Apply for a scholarship.
  • I had the chance to meet dozens of women in our online communities around the world with whom I have been talking for almost two years.  It was an intense experience meeting these women for the first time.  We laughed.  We cried.  We celebrated.  We flashed each other.  And we took soooo many selfies…..
The amazing Lisa Cohen, founder of BRACHA in Israel. http://www.bracha.org.il/
The amazing Lisa Cohen, founder of BRACHA in Israel. http://www.bracha.org.il/

 

Kathleen Maxian, Fellow BRCActivist founder of http://www.wnyovariancancerproject.com/ ...and Anna (FORCE Seattle Outreach Coordinator)
Kathleen Maxian, Fellow BRCActivist founder of http://www.wnyovariancancerproject.com/
…and Anna (FORCE Seattle Outreach Coordinator)

 

lori
Lori, co-moderator of BRCA Sisterhood.

 

I met some fellas making a documentary about BRCA…along with one of the youngest women at the conference who had opted for a Prophylactic Bilateral Mastectomy.  And I also had the chance to meet one of my very favorite bloggers, The Risky Body.

Also SO. MUCH. INFORMATION. was presented.  I consider myself fairly well-informed about BRCA, but this conference humbled me with the amount of new BRCA / cancer research and level of detail.

Here is a roundup of some of the top presentations (if they included PDF’s in the conference GuideBook):

So that brings me to the title of this post.  It’s a great time to be a BRCActivist.  There are many fierce, strong, amazing women who have been through hell and lived to talk about it.  This conference was just the tip of the iceberg, and there is so much work to be done.  And we see the value of our community – and our part in making things better for our children.  And there are so many opportunities to do meaningful and exciting work as a BRCActivist.

And another reason to attend the FORCE conference next year….the BRCA landscape is changing fast.  Case in point, the legal battles with Myriad aren’t over….but we are throwing some fierce punches with the Free The Data movement.

Yep.  It’s a great time to be a BRCActivist.  And about damn time too.