Friday, March 26, 2021

Oneinforty Tribute Video, Lauren M. Corduck

"She shared her story with as many people as possible in order to help save lives."

@oneinforty

beautiful tribute

Sunday, March 7, 2021

Virtual Event - Thursday, March 11th - Mark your Calendar!

Wednesday, March 3, 2021

TRIPLE NEGATIVE BREAST CANCER DAY

DID YOU KNOW?

All people diagnosed with #TripleNegativeBreastCancer under the age of 60 are candidates for #BRCA testing. #TripleNegativeBreastCancerDay #GeneticTesting https://t.co/H06eFjy9te
— My Gene Counsel (@MyGeneCounsel) March 3, 2021

Tuesday, March 2, 2021

Dear ACMG, Patients. Matter. Period.

Jessica Furseth wrote an excellent piece on Medium about PGT and IVF.

"The main tool parents can use to avoid passing down monogenic conditions (those controlled by a single gene) is preimplantation genetic testing (PGT-M), a process that takes place alongside in vitro fertilization (IVF). In this process, embryos are screened for the genetic variant in question. Only the nonaffected embryos are chosen for implantation and, hopefully, a successful pregnancy."

I was compelled to "respond" about the ACMG portion of her piece. The American College of Medical Genetics and Genomics is an organization that represents practitioners in the field of medical genetics. The ACMG is trying to block genetic counselors from ordering genetic testing (but allow all physicians, of any specialty and with no training in genetics, to do so). WHAT?

Here is the direct link to my response: https://medium.com/@BRCAresponder/jessica-20754ef7cf6b

@jessicafurseth excellent piece @Medium about PGT and IVF. I was compelled to comment about @TheACMG portion. https://t.co/XZUIbofkD0
— Amy Byer Shainman (@BRCAresponder) March 2, 2021

Thursday, January 14, 2021

Mark your Calendar! UPCOMING PROGRAM

So many wonderful partners joining us for this event with @BRCAresponder and @EllenMatloff ! Some are @BRCLibrary @windsorpublib @GRNFREELIB @PageAZLibrary @decaturpublib @CharlotteLibVT @PellaLibrary @SpfldMassLib @jewishgenetics @Sharsheret pic.twitter.com/7C5nVCWWrp
— NNLM All Of Us Community Engagement Network (@nnlmAoU) January 29, 2021

READING CLUB INFORMATION PAGE: https://nnlm.gov/all-of-us/nnlm-reading-club/resurrection-lily

EVENT LINK: https://youtu.be/PJBzdgCTn2E

Monday, December 28, 2020

In memory of Lauren Corduck

Gutted by the loss of such a beautiful spirit, fierce advocate and friend. Responder promises to continue your mission Lauren! 🗣️📢 @oneinforty https://t.co/vttAqKWtM2 via @BostonGlobe @BryanMarquard #BRCA #hereditarycancer #gencsm
— Amy Byer Shainman (@BRCAresponder) December 28, 2020

pic.twitter.com/mGIIQLpxcB
— Oneinforty (@oneinforty) December 28, 2020

Wednesday, December 2, 2020

National Library of Medicine to feature Resurrection Lily

Incredibly excited to share that the National Library of Medicine picked "Resurrection Lily" for its December Book Club along with two other incredible titles. Check it out here! XO Amy

BOOK REVIEW

Cancer Was Not a Gift & It Didn't Make Me a Better Person: A memoir about cancer as I know it by Nancy Stordahl
My rating: 5 of 5 stars

Raw, Honest, Authentic - MUST READ!
As a patient advocate for those with BRCA and other hereditary cancer syndromes, I personally appreciate Nancy's candor and complete transparency. Her writing is stellar; the book is captivating and on point. People who have a family history of cancer, BRCA gene mutation, or metastatic cancer diagnosis will absolutely appreciate the author's authenticity in this fantastic memoir. Must Read!

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BOOK REVIEW

A Cancer in the Family: Take Control of Your Genetic Inheritance by Theodora Ross
My rating: 4 of 5 stars

As a BRCA/Hereditary Cancer Advocate I was excited to read Dr. Ross' book. While I thoroughly enjoyed it, part handbook, part memoir, it's definitely worth the purchase just for the index! Pages 201-266 list inherited cancer syndromes by name and associated gene. Lifetime cancer risks associated with each syndrome are also spelled out in addition to current risk management guidelines for both women and men.

Those interested in health and science would enjoy this book.
Medical students and ALL DOCTORS in ALL SPECIALTIES would benefit from reading this book.
@BRCAresponder

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BOOK REVIEW

Dangerous Boobies: Breaking Up with My Time-Bomb Breasts by Caitlin Brodnick
My rating: 4 of 5 stars

I've never met comedian and author Caitlin Brodnick but I have heard her voice on her Screw You Cancer series: https://video.glamour.com/series/scre... Full disclosure: I also interviewed Caitlin via twitter for a blog post on this book: http://thebrcaresponder.blogspot.com/...

My favorite thing about "Dangerous Boobies" is its authentic voice; as I read it was as if Caitlin was reading it to me, in her sweet chirpy voice she writes like she talks raw, honest, fast, confident, sometimes insecure, often anxious, heartily reflective and mostly, "udderly" hysterical. Yup, that was me attempting channel my inner Caitlin.

As an advocate for those with BRCA and other hereditary cancer syndromes, I was excited to read Brodnick's book. I absolutely applaud anyone who is willing to be so open with their experience and Brodnick not only did this with her Screw You Cancer Series but with her book too. All was seemingly rosy as she was recovering in the last of her Screw You Cancer episodes, answering viewer questions. However, we learn in the book that all was not easy. Caitlin sheds light on tougher times post surgery, including struggling with serious depression.

I appreciate the places in the book where Brodnick gets statistics and information straight from the experts. Regarding genetic testing, I am thankful she says to see a genetic counselor and find out the facts. (I'm adding here that you can find a certified genetic counselor by phone or in person at: http://nsgc.org)

If you want to get a quick taste of Caitlin's humor and tone, just take a look at her chapter titles. My favorite one..."CANCER IS AN EMOTIONLESS BITCH WHO WILL RUIN YOUR BRUNCH PLANS"! Another chapter, TITTY TITTY BANG BANG: THE SEX PART, where she discusses having sex with her husband for the first time after surgery. The first sentence of that chapter is "Author's note: Dad and Grandpa, please skip to page 145." So perfect.

And, I cannot end this review without mentioning some stunning similarities I learned Caitlin and I have:

1. We both have the BRCA 1 5385insC mutation
2. We both have neurocardiogenic syncope
3. We both lost a close female relative at 33 years old
4. We both have Jewish fathers named Al
5. We both have moms that are hot shiksas
6. We both love writing, I'm writing my book now
7. We both have fair skin and reddish hair
8. We both have one leg shorter than the other

Very happy I ready this.
Very funny. Very real.
Very happy this is a resource I can recommend to others!
XO Amy @BRCAresponder

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BOOK REVIEW

Understanding BRCA: Living with the Breast Cancer Gene by Clarissa Foster
My rating: 5 of 5 stars

FINALLY finished reading this Clarissa! As an advocate providing education, advocacy, and support surrounding BRCA and other hereditary cancer syndromes, I truly appreciate the time and effort that it took you to complete this amazing book/BRCA resource. Women and men in the UK will absolutely benefit from the all of the guidelines specific to the UK. Others will benefit from the information regarding BRCA mutations. I will be recommending this. Unbelievable glossary, appendix, resources, and index.

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