The Blue Genes Bash LA

02/07/2017

The Blue Genes Bash LA on Monday Jan 30th was truly a fabulous event! Everyone seemed to have a wonderful time and the opportunity to really get educated about our important cause. A huge thank you goes out to all of those that helped us put together the first annual Blue Genes Bash LA! We couldn’t have done it without the support of many individuals and sponsors. Of course the honorees, Camille Grammer and Ora Karp Gordon, were fantastic and so eloquent in their impassioned words to help educate and increase awareness of Lynch syndrome. 

Dr. Ora Gordon's words that night really captured why we do what we do.  Here is what she had to say:

Welcome and good evening- For those guests less familiar Lynch syndrome is a hereditary cancer susceptibility that predisposes those who carry a genetic change to extremely high risk a variety of cancers: Colon and other GI and in women, uterine and ovarian cancer as well.

Lynch is common!  About one in 30 people with colon cancer and one in 25 with uterine cancer, regardless of their age of onset or their family history carry a mutation in a lynch syndrome gene.  Overall population carrier frequency is estimated at around 1 in 370.  In the genetics world, that is really common disease!

Despite those staggering statistics Lynch syndrome remains relatively unknown both to the public and sadly much of the medical community.

Hereditary breast & ovarian cancer was put on the world stage a few years ago when Angelina Jolie announced that because she carried a mutation in BRCA1 she was undergoing preventive surgery and has since chronicled that journey.  In contrast, Lynch syndrome, despite its frequency remains relatively unrecognized.  If you say at a dinner party, “I have a BRCA mutation” nowadays just about everyone will know what your mean.  But if you say, I have Lynch syndrome, you are more likely to get a puzzled expression and the question “you got lynched, with what??”

This is why advocacy organizations like AliveAndKickn and the HEROIC registry are so critical.  Though detecting Lynch syndrome after a single cancer is far better than waiting for that person to get a second or third malignancy,  or for multiple family members to be affected, ultimately the goal is determine WHO is at risk UPFRONT so we can prevent all cancers associated with Lynch syndrome.

Lynch tumors are unique in that a overwhelming majority demonstrate an abnormal protein that is easily tested for in pathology departments and indicate a high risk for this inherited disease.  Because of this, there has been a total shift in paradigm for hereditary cancer- from waiting until the family history has at least three affected members, and someone who was very young with cancer before recommending genetic testing, to screening all colon and uterine cancers at the time of surgery for the possibility of Lynch syndrome.    I have spent the last few years working hard to advance this concept of universal testing for Lynch in my own hospitals and networks as well as nationally.

I believe the paradigm will shift again - both in terms of movement to a broader population based approach to genetic testing for Lynch syndrome and also with early primary prevention interventions such as the exciting promise of medications like aspirin. 

I look forward to the day when no one at risk will succumb to hereditary cancer!  I thank you all again for coming this evening to support AliveAndKickn, and the resilient patients and families with Lynch syndrome.