In the genes: Family quests for glioblastoma answers

When glioblastoma hit their family for a second time, sisters Hadley Rierson and Carrie Lebovich teamed up with Baylor College of Medicine’s Dr. Melissa Bondy.

Carrie Davis Lebovich, left, and Hadley Davis Rierson, right, pose for a photo with their father.
Carrie Davis Lebovich, left, and Hadley Davis Rierson, right, pose for a photo with their father.

In June, 2013 our family received devastating news: Our 69-year-old father had glioblastoma multiforme, also known as GBM, a rare and deadly brain cancer with a median survival of 10-15 months.

Dad was already intimately acquainted with the horror of this disease: He had watched his mother die of the same tumor 30 years earlier when she was 63.

Just 13,000 people are diagnosed with glioblastoma each year in the United States. This puts the chances of developing GBM at 20 per million.

Yet, members of our father’s team at the world-class hospital where he was treated were emphatic that these tumors are not inherited. They are “sporadic,” we were told, and the 2 cases in our immediate family were “coincidental.”

Now, we are not doctors or scientists or statisticians. We are each former English majors who work in the entertainment industry in Los Angeles — but we could not accept the explanation that two succeeding generations of our family had simply been struck with monumental bad luck.

Undeterred, we kept digging for any information, any research at all on genetics and gliomas (brain tumors). My dad’s neuro-oncologist finally said “Well, there’s one person you could try…” We googled the name: “Dr. Melissa Bondy,” came up with an email address and heard back from Baylor College of Medicine’s renowned cancer epidemiologist within the hour.

What she told us validated our instinct: There is a scientific basis for our family’s bad luck. Indeed, 5 percent of brain cancer is likely inherited.

It was immediately apparent that we hadn’t just found a researcher who was interested in the genetic basis of brain tumors. We had found the researcher.

The study of familial gliomas, brain tumors that appear in two or more members of the same family, is Dr. Bondy’s life’s work and passion. She is lead author of a new paper that is a stunning breakthrough in the field. In it, the first gene ever to be associated with family predisposition to brain cancer is named: POT1.

Dr. Bondy was so accessible in our first phone conversation that we felt comfortable asking about another non-empirical hunch: Could there be a Jewish-genetic connection to brain tumors?  We explained that we knew a disproportionate number of people with GBM (in addition to our dad and grandmother) and, like us, they were mostly Jews.

Dr. Bondy replied that, no, this had never been examined but that her own grandmother, a Holocaust survivor, had also died of a brain tumor.  This discussion led to our helping hatch and fund the newly formed “Jewish Glioma Project” which will look at potential predisposition to gliomas in Ashkenazi Jews.

We understand that it is no accident that Dr. Melissa Bondy resides at Baylor College of Medicine. None of her research or critical discoveries would be possible without the cutting-edge work and superstar geneticists at Baylor’s Human Genome Sequencing Center. We also understand that only when cancer-causing genes are identified will there be new ways to screen, diagnose and treat gliomas.

Our father died last July –13 and a half months after his diagnosis, exactly as the median survival time for GBM predicted. However, we are determined, together with Dr. Bondy and her team, that this not be how his story — and that of our family and others like it — ends.

-By Hadley Davis Rierson & Carrie Davis Lebovich

Editor’s note: The Gliogene Consortium is still actively recruiting patients and their family members to be included in future research. For more information on how to participate, contact Georgina Armstrong at georgina@bcm.edu or 713-798-2951.

2 thoughts on “In the genes: Family quests for glioblastoma answers

  • December 11, 2014 at 11:21 am
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    I recently saw Dr. Bondy discuss glioblastoma brain tumors on FOX. My wife passed recently from a diffused pontine glioblastoma. What is interesting is that her grandfather also died from a glioblastoma. While we could not definatively prove a familiar connection, we suspect that one existed. If you would like more information or to discuss my wife’s case in the hope of furthering your research, please feel free to contact me. I can be reached at isendj@comcast.net

    Reply
    • December 11, 2014 at 7:53 pm
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      Hi Dan,
      Thanks so much for reading the blog and sharing your family’s story. We will be sure to pass your information on.
      Best,
      -Audrey Marks

      Reply

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