“METAvivor on the Move”

Being an advocate for those living with metastatic breast cancer is a passion of mine. How could it not be?

I will not forget. I will not forget all that my mother and my family experienced. I will not forget others taken by this disease. I will not forget those who today live under the shadow of uncertainty, face treatment for the rest of their lives and too often are forced to manage challenging side effects which accompany this treatment.

Also, I will no longer support any breast cancer organization that does not include support for those living with mets as part of its mission and actions. I just won’t. Lip service won’t cut it.

Breast cancer advocacy without mets inclusion isn’t advocacy at all.

This is why one organization I do support is METAvivor Research and Support Inc.

METAvivor is an organization that not only supports women (and men) living with mets, such support is its primary focus. METAvivor also is all about research and by now, you all know how I feel about that!

When METAvivor recently put out a call to enlist volunteers into their “METAvivor on the Move” campaign, I was in. I had to be in.

Admittedly, at first I hesitated because what can little ol’ me do? Perhaps you’re asking yourself the same thing… I don’t have a lot of spare time or resources either.

Yes, there are many things I am unable to help with, but I do have this blog!

So, I will be using my platform here, my Facebook page and Twitter account to share information and updates when appropriate. So stay tuned…

For now, here’s the general scoop on things which I am happy to pass along.

THE BASICS:

METAvivor Research and Support is an all-volunteer, patient-founded and led non-profit organization devoted to:

a) Raising awareness about metastatic breast cancer.

b) Funding critical MBC research.

c) Promoting the concept that 30% of every organization’s breast cancer research funds should be devoted to MBC research. (It’s only fair. It’s only right).

 FACTS:

• 6-10% of breast cancer patients are initially diagnosed at Stage IV.

• 30% of breast cancer patients initially diagnosed with earlier stage breast cancer eventually metastasize.

• 97-98% of all metastatic breast cancer (MBC) patients die from the disease.

• Annual MBC losses in the US currently average 40,000 including about 500 men. (Most publicized numbers exclude the men.)

• Only an estimated 2% (yes, that’s right only 2% – appalling, really…) of US cancer research funds go toward metastatic cancer research.

• Significant progress won’t happen at 2%, but will happen with proportionate (30%) funding.

 THE GOALS:

1)  30% of all breast cancer research funds dedicated to MBC research.

2)  Out-of-the-box metastasis research funding – research that will extend lives by years and decades, not weeks and months, as is presently the case.

3)  To have this disease rendered a controlled, manageable condition, such as diabetes or HIV – so patients can live long, happy, productive lives. This can be achieved with 30% funding.

THE PLAN:

METAvivor is launching a nationwide effort to raise awareness and to convince the public and our policymakers that funding of metastatic cancer research must be increased to 30% across the board.

We are establishing 10 regional teams, with representatives from every state, plus volunteers in Canada.

 JOIN:

Patients, family members, caregivers, friends and others supporting our cause are welcome. Give us your talents, your passion and whatever spare time you have. Be part of a solution that will give back life to countless persons with MBC.

If you wish to volunteer to help in any capacity of your choosing, send an email to CJ@METAvivor.org

If you would just like to learn more about METAvivor or would like to donate, visit their website here: www.metavivor.org.

One person can always make a bit of a difference. And sometimes a bit turns out to be a lot.

I will not forget.

I’m in.

How about you? 

Are you living with mbc or do you know someone who is/was?

How do you determine which charitable cancer organizations to support (if any)?