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“METAvivor on the Move”

“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)?

 

Beth Gainer

Thursday 1st of August 2013

Hi Nancy,

I'm in. I'll e-mail CJ. If I'm not able to volunteer, I will donate.

Thank you for being one of the agents of change!

Nancy

Friday 2nd of August 2013

Beth, That's great! Not sure how much of a change agent I can be, but I'm in. So glad you are too. Thank you!!

Lori Marx-Rubiner

Monday 29th of July 2013

Thank you Nancy, as always, for your never-ending support! I agree that METAvivor is one of a small handful of organizations that truly "GET IT" and I am proud to lend a hand in growing our national program. One of these days I'll write my own post!!

XOX, Lori

Nancy

Tuesday 30th of July 2013

Lori, Thanks for stopping by and thanks for the support you give to METAvivor and to so many others living with mbc.

Dorivee

Friday 26th of July 2013

Hi, i want to TY for your hard work on this subject which is extremly important. When i got MBC i did the walk, neitherless didnt know only 3% goes to mestatic funding research, i was so insulted because here i am doing something for the world and we get this kind of treatement, this year when they called me and i told them why i wouldnt to it until that missing part is fixed and that i will work hard on getting this on the open and known by others so we can get the word out and get the equal share. God BLess You for your hard work, im in NYC anyhting i cant do dont hesitate to contact me. Thanks Dorivee

Nancy

Saturday 27th of July 2013

Dorivee, I don't blame you for feeling insulted. Good for you for speaking up about why you weren't participating and what your expectations for change are. Thanks so much for your kind words and my best to you.

Stephanie Zimmerman

Wednesday 24th of July 2013

ALL IN to go ALL OUT on behalf of those facing MBC!

Let me know how I can help in the SouthEast: metro Atlanta area, please.

Stephanie

Doris Ann Price

Thursday 25th of July 2013

Stephanie - Please contact me to become involved in the Southeast Region of METAvivor. As METAvivor's Southeast Region 4 Ambassador, I am the lead representative serving states between W. Va. and Florida. We would be delighted to have you on board!

-- Doris Ann Price, Raleigh, NC EMAIL: dorisann@dorisannprice.com, PHONE: 919.696.0874

Nancy

Wednesday 24th of July 2013

Stephanie, Terrific! All you have to do is email CJ and her email address is in the post. Thanks so much!! You are awesome!

CJ Corneliussen-James

Tuesday 23rd of July 2013

Thank you, Nancy, for your support of "METAvivor on the Move". Every year METAvivor undertakes a new initiative. In 2009 METAvivor was founded and achieved non-profit status. In 2010 we began our annual MBC research grant program that this year will surpass one-half million dollars in MBC research grants awarded. In 2011 we launched our "30% for 30%" campaign. In 2012 we launched our MBCAware campaign with “The Elephant in the Pink Room” and this year, 2013, METAvivor launched "METAvivor on the Move". We are delighted with the response to our initial request for volunteers. Many of these are already actively involved in projects, giving whatever time they are comfortable giving and working on projects of their choosing. There are many opportunities to become involved wherever you reside in North America. We look forward to hearing from you!

Nancy

Tuesday 23rd of July 2013

CJ, Thanks for explaining about the past initiatives. METAvivor has and continues to do such important work. I am happy to support this organization. Thank you for all you have done and do every day as you advocate for others living with mbc. And thanks for your comment and encouraging words for others to get involved.