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Could this be a roadmap for fixing your broken BRCA gene?

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I belong to a generation of women who know they have dangerous BRCA mutations, but our options to reduce cancer risk are agonizing.  

I certainly hope for a different future for my children where we have the freedom and agency to change our own futures.

Andrea Downing July 10, 2015 Be Your Own Advocate, BRCA, BRCA / Technology, ePatient, Precision Medicine

Population-wide access to BRCA Testing: Are we ready?

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Written by KJ Surkan.  Professor Surkan is a trans-identified breast cancer survivor with a BRCA1 mutation and a PhD […]

Andrea Downing September 30, 2014 Be Your Own Advocate, BRCA / Technology, Data Sharing, ePatient, Precision Medicine

Medicine X: The anatomy of a big decision is complex.

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This past weekend I spoke an amazing conference called Medicine X.  My goal at this conference was to explore […]

Andrea Downing September 16, 2014 Be Your Own Advocate, BRCA, ePatient, Navigating Decisions

It’s a great time to be a BRCActivist.

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What is a BRCActivist? A term that I made up when I decided that “BRCA / Breast Cancer […]

Andrea Downing June 18, 2014 Be Your Own Advocate, Beyond Awareness, BRCA, Data Sharing, ePatient, Precision Medicine

Health Datapalooza: No Data About Me Without Me.

When googled – the phrase no data about me without me seems to have many more search results coming Europe […]

Andrea Downing June 4, 2014 Be Your Own Advocate, BRCA, BRCA / Technology, Data Sharing, ePatient

Three reasons to become a citizen scientist RIGHT NOW.

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Ever heard the term ‘citizen scientist’? First…here’s a working definition of what the heck it means. Citizen Science: […]

Andrea Downing April 18, 2014 Be Your Own Advocate, BRCA, BRCA / Technology, ePatient

Congressional Briefing on DNA Patents (a.k.a the post about my right to interpret my genome sequence into poetry)

On March 13th I had the chance to do something I have never done before. I attended a […]

Andrea Downing March 20, 2014 Be Your Own Advocate, Beyond Awareness, BRCA, Data Sharing, ePatient

We need a BRCA Commons.

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There was a time not so long ago when the best minds in the world were debating over […]

Andrea Downing January 28, 2014 Beyond Awareness, BRCA, Data Sharing, ePatient

How do cancer cells behave differently from healthy ones?

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A *crafty* explanation of how cancer cells behave….complete with yarn, buttons, and patchwork! In the middle of the […]

Andrea Downing January 21, 2014 Beyond Awareness, BRCA

Do we really control our own decisions?

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I’m thinking about the burden of navigating decisions that come with BRCA today, after reading this article from […]

Andrea Downing December 11, 2013 BRCA, Dealing With Uncertainty, ePatient, Navigating Decisions

What words do you use to describe yourself?

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Why are the words we choose to describe ourselves so important? Last week, I had a good conversation […]

Andrea Downing November 12, 2013 Body Image, BRCA

Collaboration is the new competition.

This past week, I attended a conference called Partnering for Cures.  It was a weird and interesting experience […]

Andrea Downing November 9, 2013 Beyond Awareness

An Accidental Encounter with Annie Parker

The following is a guest post from the Nina Wible, mother, wife and advocate for women who are […]

Andrea Downing October 16, 2013 Be Your Own Advocate, BRCA, Navigating Decisions

BRCA Mutations Made Simple

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Teri Smieja is the co-author of the soon to be released book: “Letters to Doctors” (The BRCA and […]

Andrea Downing August 28, 2013 Data Sharing, ePatient, Navigating Decisions, Precision Medicine

How can we build trust within the BRCA community as we seek to free our genes?

Tonight I met with filmmaker Joanna Rudnick and Founder of Genetic Alliance Sharon Terry to ask questions about […]

Andrea Downing July 23, 2013 Be Your Own Advocate, BRCA

Welcome to the Wild West of BRCA Data Sharing…..

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It’s been such an exciting couple of weeks!  Where do I begin?  After the landmark Supreme Court Ruling […]

Andrea Downing July 21, 2013 BRCA, Data Sharing

When you bring us all together….

Recently I spent a wonderful afternoon sharing stories with friends who are also facing BRCA here in Northern […]

Andrea Downing July 14, 2013 Be Your Own Advocate, BRCA

Privacy means people know what they’re signing up for in plain English.

I just watched this video from the late Steve Jobs, and it made me think about informed consent […]

Andrea Downing June 5, 2013 BRCA / Technology, Data Sharing

Angelina Jolie’s Mastectomy, Al Jazeera, and the Peanut Gallery

So….Tuesday at 3pm I was sitting around in a coffee stained t-shirt, blogging and tweeting.  And I got […]

Andrea Downing May 15, 2013 Be Your Own Advocate, Body Image, ePatient

Want to change your future? Here is some career advice for Young Previvors.

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The following is a guest post from Ellen Matloff, Director of the Cancer Genetic Counseling Program at Yale University. […]

Andrea Downing April 30, 2013 Be Your Own Advocate, Data Sharing

Adventures at the Steps of the Supreme Court

April 15th started out for me with excitement and nerves.   After weeks of preparation, I showed up […]

Andrea Downing April 23, 2013 Be Your Own Advocate, BRCA, Data Sharing, Precision Medicine

Association of Molecular Pathology v. Myriad Genetics will affect us all.

The following post is by Shannon Davis Litchy, attorney, breast cancer survivor, and mom.  Follow her on twitter […]

Andrea Downing April 15, 2013 Be Your Own Advocate, Bravery, Data Sharing

Maybe there is no such thing as a single cure for cancer….

Rather than a single cure for cancer, consider that the future holds a whole range targeted gene therapies tailored for […]

Andrea Downing March 22, 2013 BRCA, ePatient, Previving

How do you find a good doctor? Here are some tips.

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Over the past year I have had more than my fair share of visits with doctors as a […]

Andrea Downing March 13, 2013 Dealing With Uncertainty, ePatient

How a patient advocate discovered a massive security problem with closed groups on Facebook, and became a white hat hacker.

Here we share the story of how Andrea Downing and Fred Trotter discovered one of the most dangerous health data security vulnerabilities in history.  As of June 29th, this vulnerability has been fixed, which is why we can now talk about it.   

jillholdrengmailcom July 4, 2018 Uncategorized

Breastfeeding after a Mastectomy

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And once again, life as a previvor has made the experience a little different for me and I thought I would share what I’ve learned about starting a family after a mastectomy.

Andrea Downing May 15, 2016 Be Your Own Advocate, ePatient, Starting A Family

From Awareness to Action: A Petition Calling on Myriad Genetics

From Awareness to Action: A Petition Calling on Myriad Genetics to Free the Data by KJ Surkan, PhD It’s […]

Andrea Downing October 11, 2015 Be Your Own Advocate, Beyond Awareness, BRCA / Technology, Data Sharing, ePatient, Precision Medicine

Myriad Genetics: Give Us OUR Damn BRCA Data!

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KJ Surkin got this petition on Change.org set up and ready to go. For information on what this petition […]

Andrea Downing October 7, 2015 BRCA / Technology, Data Sharing

Flying my Previvor / BRCActivist flag at Medicine X

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It’s National Previvor Day.  I had to catch myself after posting ‘Happy National Previvor Day!’ on Facebook.  Don’t get […]

Andrea Downing October 1, 2015 Be Your Own Advocate, BRCA, Data Sharing, ePatient

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