Something big is about ready to happen and I want you, all my cyberspace buddies, to be a part of having made it come to fruition.  Currently October is dedicated as “National Ovarian Cancer Month” and September is dedicated as “National Breast Cancer Month”.  There is legislation currently pending to establish the last week in September as “National Hereditary Breast and Ovarian Cancer (HBOC) Week” with the Wednesday of that week as “National Previvor Day”.  HBOC Week and Previvor Day will raise awareness of hereditary cancer, leading to more education, research and resources.  Knowledge of a genetic predisposition to cancer, available risk management and treatment options can save lives!  I know this personally!  I’m asking that you help by writing your local House Representative today asking that they support HR #1522.  We need to have all co-sponsors on board by August 2^nd which is only a week away!

I have a personal attachment to the term Previvor.  “Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. It identifies individuals who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. I personally initiated the need for this term by creating a challenge on FORCE: Facing Our Risk of Cancer Empowered’s main message board where I posted “I need a label!” I was also involved in brainstorming sessions to establish the term. 

My post had come out of shear frustration from not knowing how to identify all that I was going thru.  A term was needed that succinctly identified those individuals, like myself, living with risk and our unique needs and concerns that were separate from the general population, but different from those already diagnosed with cancer.  Prior to term Previvor being coined, the medical community used the term “unaffected carrier” to describe those who had not had cancer but had a BRCA or other cancer-predisposing mutation. “Unaffected carrier” applied from a medical perspective, but didn’t capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns.  Previvor is a term currently used by the high-risk medical community, including leading researchers in BRCA.  It’s now time to introduce it to the country which will happen if HR1522 passes. 

We need to have all co-sponsors on board by August 2^nd  which is just a few days away so PLEASE take a quick moment to write to your representative right now.  At least 100 co-sponsors are needed to pass the bill.  Let your House Representative know that HR #1522 is critical in the fight against hereditary cancer. 

1. Visit FORCE’s advocacy page for more information and for an e-mail sample you can sent in support of HR1522. 
2. Contact your House Representative today.  Go to http://writerep.house.gov/writerep/welcome.shtml which will lead you to the link that allows you to send them a quick email. 

Every year when the last week in September rolls around and it’s HBOC Week and Previvor Day you will know that YOU personally were involved in making that happen!  Please feel free to share this initiative with everyone!  We need to reach as many people in as many states ASAP. 

Thank you so much for your help! 

P.S.  A little fun fact.  Did you know that Previvor was voted one of the Top 10 Buzzwords for 2007 by Time Magazine?  It was #3.  Woot!

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