Honoring Norene

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xo Honoring Norene xo Norene and Mom > 1970's Norene ( on the left) was my mom's best friend When mom's best friend Norene "got" breast cancer she was 34, but wasn't diagnosed until age 35. Her first doctor pooh-poohed the lump in her breast, telling her she had lumpy breasts and suggested she go home and eat more protein. So, when she went back at age 35 and the breast cancer had spread to her lymph nodes, doctors told her she had 5 years to live. Norene died exactly 5 years later. Norene died 40 years ago today, age 40. #metastaticbreastcancer

A post shared by Amy Byer Shainman (@brcaresponder) on Oct 6, 2018 at 10:58am PDT

Starting A Conversation About Mom’s Genes - by Guest Blogger Shannon Pulaski

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Shannon Pulaski

When my twin daughters were twelve months old, I decided to see a genetic counselor. Although, for me, I didn’t really feel like I had a choice. It felt like something I had to do – for them.

As a result of that test, I have had to make a lot of decisions that have and will continue to impact not only me but my entire family. In the beginning of my journey, my children were small. My husband and I could move through those decisions and the kids were blissfully unaware. But, now they are a bit older. And my family health history continues to play a role in our own family’s story. I wonder how I can provide them with a framework for understanding this genetic mutation has profoundly affected our family. We have many more BRCA obstacles yet to come. There is no doubt that my daughters and my son will have questions. It became clear that we would need to have conversation. 

But, it was also clear that it had to be handled with care.

And so Proactive Genes was born with the idea that parents could benefit from tools that could help them start a conversation with their children about family health history. Beyond that, Proactive Genes strives to become a community where parents can share their stories, concerns, fears, and successes as they parent and move through hereditary risk and disease.

As genetic information and testing becomes more readily available, it will have a tremendous impact on medical decisions going forward. Parents will need to consider how to effectively share this information with their children as it will play a role in both their own lives as well as their children’s lives. Proactive Genes’ core mission is to encourage children to learn about how their family’s health history can impact their own health.

This week, I am launching our first tool in our Proactive Genes’ tool box, a children’s book entitled Mom’s Genes. Intended for children ages 3 – 7, this first installment will assist parents and as a stepping stone for young ones to easily grasp sophisticated concepts in an interactive and playful manner. With age appropriate content, rhythm verse and vivid illustrations, Mom's Genes can help you teach your children the importance of being proactive about their health and wellness at a young age.

Mom's Genes 

is available for purchase on Amazon

Shannon Pulaski is an attorney, author, avid patient advocate, wife, and mother of three. With a strong family history of cancer, Shannon knew she would have to start a conversation with her children about their family's health history. She created Mom's Genes to help other parents share their own family's health history and encourage children to establish healthy lifestyle behaviors at a young age. 

To learn more visit: www.proactivegenes.com 
You can also listen to Shannon here on CURE Talks Cancer Podcast.

Pioneering Women, Angelina Jolie and Mac and Cheese

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🚨 New blog post 🚨
Our first guest blog post is by the one and only @BRCAresponder! Read about a conversation she started with her children. https://t.co/UWjueaDGgI #gencsm #brca #familyhistory

— Proactive Genes (@ProactiveGenes) August 28, 2018

#GenCSM - Twitter Chat Transcript 6/19/18

SPRING 2018 - Hereditary Cancer News

An open letter to Anne Wojcicki, CEO and Co-Founder, 23andMe

Amy Byer Shainman
@BRCAresponder

Dear Anne,


I don't need a job, but you probably need to hire me. 

In response to your recent blogpost and news. Your company 23andMe has received FDA authorization to report on three variants in the BRCA1 and BRCA2 genes associated with increased risk for breast, ovarian, and prostate cancer. Yes, these variants are most common in people of Ashkenazi Jewish descent. As an advocate for those with BRCA and hereditary cancer, what has caused ME sleepless nights is worrying about the many current 23andMe customers who: 
1) have a BRCA mutation other than the three which you are offering testing as there are thousands of BRCA mutations as well as at least 50 different hereditary cancer syndromes.
2) get a "negative" BRCA test result under your test and now either think they are in the "clear" or now have a false sense of security about their cancer risk 3) get a positive BRCA test result under your test and have no clue of what to do next Many people fall through the cracks with a screening system that may be leaving them unaware of their risk. Genetic testing results, positive or negative is intricate, nuanced, and not black and white. I was the one on the 23andMe message boards years ago doing damage control as people did not understand the limited scope of 23andme's BRCA testing. As an advocate in the trenches, I am continually picking up the pieces of genetic testing messes. Yes, "studies have found women falling through gaps in breast cancer screening." Now people will fall through the gaps with the 23andme BRCA testing. In her 2015 recommendation for broader screening, geneticist Mary-Claire King, Ph.D., said, “Every breast cancer patient we identify after she develops cancer represents a missed opportunity for prevention.”

Yes, agreed, and to help avoid this, 23andMe can act responsibly by implementing these suggestions: 

1) An easily accessible page on your website dedicated to BRCA and hereditary cancer created by a certified genetic counselor. 2) Employ certified genetic counselors solely for the reason to answer questions on your message boards, and for your customers. 3) Next to a consumer's "BRCA" result, negative or positive, LINK to the BRCA page on your website created by a certified genetic counselor. I politely urge you to think about this, and please act responsibly. If you believe people have the right to know about this risk, if they choose, please take care of your customers by giving them a clear way to understand what the testing you are offering means and doesn't mean.

In truth, I am okay with you not hiring me, but please consider my suggestions. If you think it's "a failure" that people are unaware of their heightened genetic risk for breast and ovarian cancer until a doctor diagnoses them with cancer, then you will take these suggestions seriously, and act responsibly. Thank you. In health,

Amy Byer Shainman The BRCA Responder @BRCAresponder Advocate for those with BRCA and other hereditary cancer syndromes BRCA1 mutation carrier Executive Producer - Pink & Blue: Colors of Hereditary Cancer

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#GenCSM - Twitter Chat Transcript 2/21/18