The BRCAlert: Oneinforty's December 2017 eNewsletter

December 2017, Issue 2

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The BRCAlert

This second issue of The BRCAlert features the launch of our new "Ask the Physician" column, Sheila's "I am Oneinforty" story and a report on Oneinforty's inaugural symposium that took place in Concord, MA last month.

Ask the Physician: Dr. Nadine Tung, MD

Question from Len in Newton, MA

"Is '1 in 40' the average likelihood of having a BRCA gene mutation for Ashkenazi Jews? Neither my wife nor I have any known family history of the associated cancers. Does that mean our odds are lower than 1 in 40? If someone does have a family history of certain types of cancers, I would assume their odds are higher. True?"

Response from Dr. Nadine Tung, MD

Director, Cancer Genetics and Prevention Program

Director, Breast Medical Oncology

Beth Israel Deaconess Medical Center

"That is true. One in forty is an average. If someone has a family history of breast cancer or ovarian cancer, for example, the risk would be higher. Likewise, for someone who has no family history the likelihood might be lower. It is worth remembering though, that the larger a family is, with more women on both sides of the family, the more a lack of family history of cancer is meaningful. However, unless someone has an extremely large family, it is hard to be completely reassured by a lack of cancer in the family. Several studies have shown that for Jewish men and women, half of the BRCA mutations detected are in individuals who did not think they had a family history of breast or ovarian cancer. That may be due to small families, or lack of knowledge about family history."

Questions? Submit your questions for this column to laurenc@oneinforty.org

Sheila's "I am Oneinforty" Story

"Three years ago at age 72 I received an email from my first cousin whom I had not heard from in a long time...My mother’s side of our family drifted away after my mother died from pancreatic cancer in 1958. My cousin wanted to let me know that she had just been diagnosed with pancreatic cancer and, after a genetic test, discovered she had the BRCA2 gene mutation. She also wrote that another cousin was tested after finding that she had breast cancer. She also had the BRCA2 gene mutation. I knew then that my mother must have been the carrier. I immediately called my doctor to schedule the genetic test..."

Read Sheila's full story

Oneinforty's Inaugural Symposium Achieved BIG Impact

Many thanks to the approximately 125 people who attended Oneinforty's inaugural symposium last month. And, thank you to all of the Oneinforty volunteers who worked tirelessly to ensure the success of the symposium, which received overwhelmingly positive reviews including:

“Very moving and thought provoking”

"Great mix of medical, clinical and personal speakers"

"Every speaker was compelling and covered a different aspect"

The symposium, entitled Knowledge is Empowering: Understanding the Jewish - Cancer Connection, was held at Congregation Kerem Shalom in Concord, Massachusetts on November 9, 2017 and was sponsored by Hadassah and the synagogue. Following Rabbi Darby Leigh's warm welcoming remarks, Executive Director Lauren Corduck launched Oneinforty's new "I am Oneinforty" Story Project by sharing her personal story of what it means to be a member of a "BRCA-positive family."

A social worker from The Virginia Thurston Healing Garden acknowledged the emotional complexity of the symposium topic and led a brief, grounding mindfulness exercise. She also pointed out several resources including therapists in private practice in Greater Boston who serve on Oneinforty's medical advisory board and two exhibiting nonprofits: Sharsheret and FORCE: Facing Our Risk of Cancer Empowered .

Leading medical professionals affiliated with Massachusetts General Hospital , Dana-Farber and Beth Israel Deaconess Medical Center discussed:

"Genetics 101" regarding BRCA gene mutations
The genetic counseling and testing process
Options for genetic counseling and screening including the new BFOR Study
Resources for BRCA-positive individuals and their families
Some medical reasons to consider genetic counseling and screening

Howie and Debra, two BRCA-positive cancer survivors, shared their moving "I am Oneinforty" stories and described how knowing their BRCA-positive status helps them manage their cancer risk in partnership with their medical teams. All three "I am Oneinforty" stories told at the symposium illustrated that men are just as likely as women to inherit and pass on a BRCA gene mutation. The stories also underscored the importance of sharing information learned about the prevalence of BRCA gene mutations in the Ashkenazi Jewish population with family and friends.

The symposium concluded with an engaging Q&A session and an opportunity for guests to mix and mingle, get to know the exhibiting nonprofits and discuss questions with panelists individually.

Desired Outcomes and Impact Achieved!

The symposium surveys, tabulated by Cambridge Focus on a pro bono basis, indicate that the event helped Oneinforty achieve its key desired outcomes, namely to:

1.) Increase Ashkenazi Jews' awareness of their one-in-forty risk of inheriting a BRCA gene mutation and knowledge on the topic. P rior to learning about Oneinforty, just 38% of survey respondents were aware of Ashkenazi Jews' one-in-forty risk. Self-described knowledge on the topic was substantially increased by the symposium as shown here:

2.) Increase attendees' inclination to share their knowledge of BRCA gene mutation risk with others.

3.) Increase Ashkenazi Jewish attendees' inclination to seek genetic counseling and screening for the BRCA gene mutations.

Did You Miss Our First Symposium?

Do not fret if you missed Oneinforty's symposium last month. You will be able to watch a video of the event on CCTV 's web site in early 2018 and we will send you an invitation to Oneinforty's spring 2018 symposium to be held in the Boston area (details coming soon).

In the meantime, consider bringing Oneinforty's founding executive director and a licensed genetic counselor to your synagogue, community-based organization or college for an educational, empowering presentation. Please contact Lauren Corduck at laurenc@oneinforty.org for details.

Dine at Not Your Average Joe's

in Acton, MA to Benefit Oneinforty

Not Your Average Joe's in Acton, Massachusetts has selected Oneinforty to be the December 2017 beneficiary of its Not Your Average Cause program! Every Tuesday throughout December, Not Your Average Joe's will contribute 15% of your dine-in and takeout purchases to Oneinforty.

Simply present this Not Your Average Cause certificate to your Not Your Average Joe's server or verbally state your affiliation with Oneinforty. We truly appreciate your support.

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Oneinforty | 617-823-3630 | laurenc@oneinforty.org | www.oneinforty.org