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Dear Scientific Researcher,
What you do is extremely important and provides hope to those like me living with metastatic breast cancer. The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.
I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies. You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate. Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask: “So how does this study help us save lives or prevent the disease from happening in the first place?”
Today is Metastatic Breast Cancer Awareness Day (MBCAD) … one day for the roughly 40,000 of us dying each year of the disease. One day for the estimated 73,000 – 86,000 diagnosed annually with our disease. One day for the unknown number of Americans living at any given time with our disease.
We deserve more. Much more. We are 30% of the breast cancer population and we deserve 30% of breast cancer research funding; we deserve 30% of breast cancer support activities; we deserve 30% of Breast Cancer Awareness Month (BCAM). Thus METAvivor is claiming not just Oct 13th for recognition of metastatic breast cancer; we are claiming 30% of the month. We are claiming Oct 13th – Oct 22nd … 10 days instead of one.
Stay tuned to this page for new information coming out every day for the next ten days. Let our voices be heard!
When my mother suffered a hemorraghic stroke in August 2008, we could not find her living will for two days. Now my mom had watched her own father die a lingering death, his body tied to a hospital bed by tubes, IV’s and a catheter while he hung in a tenuous coma for over a month. Mom had sat by my grandfather’s hospital bed the entire time, watching her father fade as the medical staff moved constantly in and out of the room to tweak the dials delivering the medication that kept him in delicate balance between life and death.
I was recently asked to comment upon a flier of unknown origin that was making the rounds on Facebook. On it were three pink circles, each with one lonely cut-out sequentially labeled 1.1% (DoD), 17.3% (Komen) and 27% (NIH). Written across the top in bold letters was: “How much breast cancer research money is spent on prevention? Way less than you’d think.” Whether the originator truly believes this or whether he or she is simply taking advantage of the fact that the pie charts can be misleading, I do not know. What I do know is that it’s time to set the record straight.
Recently, Dian “CJ” Corneliussen-James, co-founder of METAvivor.org, stepped down as President. We will continue to benefit from her passion and commitment as she serves in her new role as Director of Advocacy. We are pleased and fortunate that Kelly Lange stepped up to become our new President. Here is a message from Kelly to all our friends and supporters.