A Letter to Myriad

A Letter to Myriad

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Myriad tries to spin genetic profiteering with informational "PSA"

Myriad tries to spin genetic profiteering with informational “PSA”

Since the posting of this new “informational” PSA from the company that formerly held a patent on BRCA1 and BRCA2, there is growing outrage among…

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It's a great time to be a BRCActivist.

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…

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Health Datapalooza:  No Data About Me Without Me.

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 than the US.  It has a nice…

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Three reasons to become a citizen scientist RIGHT NOW.

Three reasons to become a citizen scientist RIGHT NOW.

Ever heard the term ‘citizen scientist’? First…here’s a working definition of what the heck it means. Citizen Science:  projects in which volunteers partner with scientists…

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

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 Congressional briefing!!  There I sat, a fly…

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BRCA Mutations Around the World

BRCA Mutations Around the World

Holy smokes.  If this isn’t a reason to make sure we have global access to genetic testing for cancer risk…I don’t know what is. http://www.hindawi.com/journals/bmri/2013/928562/#B141…

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SXSH, NHS Data Breach, and Myriad loses again....a busy week in the BRCAsphere!

SXSH, NHS Data Breach, and Myriad loses again….a busy week in the BRCAsphere!

It has been quite a week in the genetic data geek-o-sphere!  There are three big stories happening right now, that are really interesting and relevant…

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We need a BRCA Commons.

We need a BRCA Commons.

There was a time not so long ago when the best minds in the world were debating over whether the whole human genome could be…

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How do cancer cells behave differently from healthy ones?

How do cancer cells behave differently from healthy ones?

A *crafty* explanation of how cancer cells behave….complete with yarn, buttons, and patchwork! In the middle of the video, I love how the narrator explains…

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Before I die __________.

Before I die __________.

I’m hanging out at my husbands lab today and just stumbled on a thoughtful and hilarious project. Here is what happens when you ask a…

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Health Activist Awards - Please endorse us!

Health Activist Awards – Please endorse us!

Guess what?!  Three of my fellow BRCActivists and I were nominated for the WEGO Health Activist Awards!! I am endorsing these other lovely ladies who…

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The fire in my belly.

The fire in my belly.

I begin this year with a heavy heart and a fire in my belly, after learning about the passing of two women in one week….

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Nope, I'm not gonna "make hereditary cancer a holiday centerpiece."

Nope, I’m not gonna “make hereditary cancer a holiday centerpiece.”

Today I was tweeting away to the #BRCA and #BCSM hashtags when I noticed something strange.  Oh, what’s this?  @MySupport360 sounds nice! Don’t know how…

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Do we really control our own decisions?

Do we really control our own decisions?

I’m thinking about the burden of navigating decisions that come with BRCA today, after reading this article from Dan Ariely.   To what extent do we…

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TSCA Reform and symbolic gestures....

TSCA Reform and symbolic gestures….

I’ll be completely honest – I was never the petition signature gathering type. There’s something about petitions that remind me of those volunteers walking the…

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FDA B*tchslap of 23andMe: A BRCA Previvor's Perspective

FDA B*tchslap of 23andMe: A BRCA Previvor’s Perspective

Yesterday, the nerd interwebs exploded with news of the FDA’s Warning Letter to 23andMe. For those of you reading this blog for the first time, hiiiii!…

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I spy some brave women changing breast cancer research!

I spy some brave women changing breast cancer research!

Do want you know why we put billions of dollars into breast cancer research, yet have little to show in progress over the past three…

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Are you a feminist?  Are you a Previvor?

Are you a feminist? Are you a Previvor?

Last week, I had a good conversation with a gentleman about my quest to help women take ownership of their BRCA data.  The word ‘feminist‘…

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Collaboration is the new competition.

Collaboration is the new competition.

This past week, I attended a conference called Partnering for Cures.  It was a weird and interesting experience seeing some of the people who I…

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An Accidental Encounter with Annie Parker

An Accidental Encounter with Annie Parker

The following is a guest post from the Nina Wible, mother, wife and advocate for women who are BRCA+.  She attended an exclusive FORCE screening…

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Before you spread awareness about breast cancer this month...

Before you spread awareness about breast cancer this month…

Is it just me or does breast cancer awareness month feel a little strange this year?   The government is shut down…some people are sharing…

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Our children deserve better.  Bryna's YWSBC story.

Our children deserve better. Bryna’s YWSBC story.

The following post is from Bryna Siegel Finer, who writes for Blogging BRCA.  Bryna is a mom, writer, and advocate for women and men in…

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What does healthcare reform mean for Previvors?

What does healthcare reform mean for Previvors?

Leslie Gonzales is an advocate for Previvors who specializes in medical benefits. She has worked for most major carriers over the duration of her career…

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BRCA Mutations Made Simple

BRCA Mutations Made Simple

Teri Smieja is the co-author of the soon to be released book: “Letters to Doctors” (The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition;…

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

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 their Free The Data campaign.  Background: the google hangout…

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

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

It’s been such an exciting couple of weeks!  Where do I begin?  After the landmark Supreme Court Ruling that determined our genes indeed cannot be…

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Be Brave, Be Safe, Keep Moving

Be Brave, Be Safe, Keep Moving

Meet Tommy Carroll. He has been skating since he was ten, but has been blind since the age of two… BRAVE from EyEFORcE on Vimeo.

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When you bring us all together....

When you bring us all together….

Recently I spent a wonderful afternoon sharing stories with friends who are also facing BRCA here in Northern Virginia.  As I sat listening to their…

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A year ago today....

A year ago today….

I made a tough decision to have a mastectomy due to a BRCA1 mutation.  I can’t believe it’s been a year!  A year without living…

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Gene Patents make it to the Daily Show!

Gene Patents make it to the Daily Show!

The Daily Show with Jon Stewart Get More: Daily Show Full Episodes,Indecision Political Humor,The Daily Show on Facebook

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Little Previvors, Big Data.

Little Previvors, Big Data.

The dust is only beginning to settle on last week’s Supreme Court decision.  We celebrated together.   We did cartwheels.  The goal of Association of Molecular…

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I called Myriad's customer service to ask for access to my genetic data.

I called Myriad’s customer service to ask for access to my genetic data.

Well, last week was quite the adventure.  I don’t think I’ll have many chances to make a tiny little imprint on history, but when the…

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

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 for sharing BRCA data. He says:  “I’m…

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

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 a call from Al Jazeera.  “Can you…

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

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

The following is a guest post from Ellen Matloff, Director of the Cancer Genetic Counseling Program at Yale University.  Ellen has been a pioneer in the…

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Adventures at the Steps of the Supreme Court

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 for the big day ready to talk…

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

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 @SLLitchy On April 15, 2013, SCOTUS will…

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

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 the different genetic variations of this disease. …

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

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

Over the past year I have had more than my fair share of visits with doctors as a patient and a caregiver.  After hearing horror…

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Happy Genome-aversary!

Happy Genome-aversary!

Today marks the 14th anniversary of this announcement of the human genome project.  Happy human genome-aversary!

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